For two years, we have fought. Fought for a diagnosis. Fought for a cure. Fought for mobility and access. Fought for answers. Fought for faith. Fought for more time. Fought against pain, decline, and frustration. Fought…fought…fought. We are tired.
A week ago, I shared a photo of Ben on my social media that celebrated one of our child’s accomplishments and the blessing it was to have their dad experience it in person. Someone commented negatively on it. It stung. We were very hurt and angry by what was said. How could this person not know what a huge deal it was for Ben to be there? How the very act of joining us in person took all the energy he would have for two days, maybe more? How happy this child was to not have to tell him about the game but got to see his dad experience it? It was another “thing” in a long list of “things” we had to fight. Judgement, isolation, and loneliness.
In our fight against this disease, we haven’t shared much outside of our inner circle with what that fight looks like in our daily lives. This social media friend wasn’t aware because we haven’t fully shared. We’ve sheltered our children, even our adult ones, from some of the hardest and most difficult pieces of this fight. And perhaps, if we are being honest, we’ve sheltered ourselves from the harsh realities of what is coming. What is already here. We’ve tried to maintain as much normalcy as possible. We’ve tried to maintain as much dignity as possible.
In the past several weeks, we have had to come to terms with a shift and decline in Ben’s condition. We’ve spent a lot of time in contemplation and prayer about what is next in our fight against neuromuscular disease. There is one answer that we have found peace in and that is submission. Webster’s Dictionary defines submission as “an act of submitting to the authority or control of another”. To surrender. We are no longer fighting the war against neuromuscular decline and are moving forward with an understanding of what the outcome will be. Submission doesn’t mean that we are giving up. It means we are surrendering to a will higher than our own, submitting to God’s plan for Ben’s physical body and mortality, submitting to His plan for our children, and submitting to His plan for me.
For a while, I have been afraid to share my innermost thoughts and fears. I fought to keep them inside. Sharing them with my closest friends would somehow make them more real. It has been painful to admit that my prayers have shifted. They are now prayers of submission and surrender. As a wife, I’m no longer begging God for healing and answers, but rather peace, strength, and the ability to let my husband physically go from this world to the next. For Ben, his prayers have shifted to something similar, asking for strength for his family, for his beautiful children, for himself. They are prayers of reverence, acknowledging that Heavenly Father is in the details of our lives, despite our own desires and wants. Fighting is no longer about physical strength, but for the spiritual and emotional strength required to endure what is coming.
Earlier this week, we spoke with dear friends about our thoughts of submission, fighting, and sharing more of our struggles outwardly. They enthusiastically encouraged it, reminding us that part of submission is also about being vulnerable so that friends and family can walk along with us.
So here is to submission…to surrender…to vulnerability. A glimpse in to our daily life:
- Ben can no longer hold up his head. His neck muscles are too weak. He has to be reclined in his wheelchair or wear a specially designed brace to keep his head from dropping forward.
- Ben’s core muscles have deteriorated to the point that he can no longer sit upright in his wheelchair. While we work with our medical equipment provider to get the appropriate additions to his chair, he cannot go in a car, sit at the dinner table with his family, or sit in the shower unassisted.
- Ben requires assistance to transfer from his wheelchair to the bed or to the recliner. For a long time, he could use one leg to leverage and scoot (for lack of a better word), but that leg is now too weak to transfer without assistance. We have purchased a Hoyer lift and will begin using it to move him from place to place.
- Ben cannot shower unassisted. Before, I only helped with washing his hair, but his loss of core and neck strength means he needs help with all aspects of showering and dressing.
- We are now choosing foods that are easily chewed. One of the most unfortunate challenges of neuromuscular diseases are the decline in muscles that do functions required to sustain life. Eating is a challenge and swallowing is also beginning to be affected.
- Breaking his tailbone and having arthritis in his hips and sacral joints has made sitting in his wheelchair nearly unbearable for a year. He has missed nearly every family function or kid’s activity (thank goodness for live streams) outside of the home and that is not likely to change.
- Other systems are also affected including bladder function and from time to time, his oxygen saturation levels.
All of these things mean that Ben spends nearly all day in bed. It takes a great deal of effort to move to transfer out of bed and then in to the recliner in the front room. And while the rest of us do our best to include him in our daily lives, you can imagine how isolating and alone he must feel from time to time.
There is no way to sugar coat our reality. This is hard, hard stuff. For a long time we have remained somewhat silent about the challenges we face daily because honestly, there wasn’t much positive to share. Some days it is all we can do just to keep going, to keep our chins up, to get out of bed, and to put one foot in front of the other – those have been monumental moments. We also didn’t want to seem ungrateful for the amazing gifts we have been given (trust me, we are incredibly grateful).
There is beauty in the struggle. There is faith. There is hope. Not for a cure but in eternal life. There is joy. There is immense gratitude. And there is sorrow and grief. One of my favorite songs is “Battle Belongs” by Phil Wickham. Surrender and submission require humility and an understanding that in all of the suffering, we are not fighting alone.
When all I see is the battle, you see my victory When all I see is the mountain, you see a mountain moved And as I walk through the shadow, your love surrounds me There's nothing to fear now for I am safe with you So when I fight, I'll fight on my knees With my hands lifted high Oh God, the battle belongs to you And every fear I lay at your feet I'll sing through the night Oh God, the battle belongs to you And if you are for me, who can be against me? Yeah For Jesus, there's nothing impossible for you When all I see are the ashes, you see the beauty Thank you God When all I see is a cross, God, you see the empty tomb So when I fight, I'll fight on my knees With my hands lifted high Oh God, the battle belongs to you And every fear I lay at your feet I'll sing through the night Oh God, the battle belongs to you Almighty fortress, you go before us Nothing can stand against the power of our God You shine in the shadow, you win every battle Nothing can stand against the power of our God An almighty fortress, you go before us Nothing can stand against the power of our God You shine in the shadow, you win every battle Nothing can stand against the power of our God An almighty fortress, you go before us Nothing can stand against the power of our God You shine in the shadows, you win every battle Nothing can stand against the power of our God So when I fight, I'll fight on my knees With my hands lifted high Oh God, the battle belongs to you And every fear I lay at your feet I'll sing through the night Oh God, the battle belongs to you Oh God, the battle belongs to you
We are entering a new season. It won’t be easy. In fact, it will be the hardest thing we will ever do. Like the song suggests, it is time to fight on our knees with our hands lifted high. We hope you’ll join us. We hope you’ll feel peace in submission and surrender. We hope you’ll laugh with us and cry with us. Truthfully, we know we are going to need you. We hope you will feel our love and gratitude as we lay our fears at His feet.