I consider watching our daughter struggle through the symptoms of Lambert-Eaton myasthenic syndrome (LEMS) one of the most difficult aspects of my life. As I look back on the last two and a half years since Grace began showing symptoms, I realize how I haphazardly stumbled through the five stages of grief.
After only a month of symptoms, Grace could barely walk. After what seemed like an eternity, we got an appointment with a pediatric neurologist. He took one look at Grace and said to buy her a wheelchair. At the very least, she needed a walker.
His words hit me as if I had just run headfirst into a brick wall. I was dizzy and disoriented by what he’d said. A few weeks earlier, my daughter had been running on the basketball court. Now she needed a wheelchair? It seemed so wrong. I just couldn’t believe it.
I was in denial. Buying a wheelchair or a walker was out of the question. If I did that, it made the disease more real and permanent. I held on to hope that something would change and she would somehow gain back the mobility she had lost.
Gradually, my denial turned to anger. We bought a walker and a wheelchair. These purchases made me mad. The much-needed aids were a physical reminder of what we had lost and the struggle our daughter now faced. I was angry at my family and friends who had healthy children. I was angry at God for not “fixing” the situation. My anger boiled over and it nearly broke me.
But most people can’t stay that angry for long. Soon after walking through the misplaced anger, I began to bargain my life away. Take me, not her. Let me be the one who suffers and loses the ability to walk and live life with ease. She was so young and I had already lived a lot of life. I would have bargained my health and life away for her sake if I could have.
But we all know we can’t bargain our way out of a health crisis.
Once I realized there was no bargaining to be done, depression enveloped me fast and hard. I consider myself someone who smiles easily and finds joy on most days, but during this time I believed I would never smile again. Depression seeped into every corner of our home. My husband felt helpless. Our children saw it and it scared them. It was a bleak time, but a necessary part of grieving what was lost.
Grief is messy, and it’s hard to look at. It bleeds into all aspects of our lives and takes control of our emotions. But once we stumble our way through the depression, anger, and bargaining, we can reach a point of acceptance. Only then can we begin to find emotional health and healing. It is only through our acceptance that we can be fully there for our loved one learning to live with a rare disease.
Acceptance is not being OK with the loss you are grieving. It is recognizing the new normal that the loss has ushered in. At this point, we are able to be completely there for our loved one who is sick, and for others in the family working through their own emotions.
It took me a long time to accept this was the path we were walking. I still pray for complete healing every day for Grace. Sometimes I cry when I see her struggle. I will never stop fighting for the best outcome for her.
But as I walked through the grieving process, I was able to face the realities of this disease. Now, when we talk about accommodations for Grace, I don’t fall into depression. When we walk the halls of the hospital, I am not walking in a daze. I have found my footing and know we will be OK. At times, I am even able to see some blessings in this journey.