Our family lives an isolated existence holed up in our home because my son’s health is poor. While we have done our best to manage his illnesses, most of our friends have completely abandoned us. Instead of receiving help from others, we are offered prayers for my son’s healing, for strength, and comfort. However, I have to be honest, prayers to me feel empty and meaningless. Instead of praying for me, I need someone to help me carry this heavy load.
My family is stuck in the deep end of an endless pool. For the past year, we have been treading water. Our arms are tired. We are tired of gasping for breath. Our legs have lost the energy to continue to kick. We don’t have floating devices.
Even though we have lifted our arms and called for help, I haven’t seen a lifeguard come to rescue us. We are still trying our best to hold on. While we do so, the world keeps on going around us. Our son is chronically ill. His care is causing us to drown.
I’m the first to admit I’m not the best at asking for help when I’m drowning. Most of the time I’m using my energy not to sink. I don’t have the vocal capacity to direct people into action. Generally, I’m too neurotic to accept people coming into my home and cleaning or doing chores for me.
My parents have always said I was the most independent 2-year-old they ever met, and as I approach mid-life, not much has changed. When I reflect on the person I am, I should not be surprised that my independence has left us without any assistance and very little support.
In the middle of all of this chaos, the only thing I have genuinely desired is someone to be here for me, hold my hand, bring me coffee, and let me feel like a human for 15 minutes.
Well-meaning neighbors, acquaintances, and friends will check in. More often than not just let us know they are “praying for us.” I have to be honest, praying for my son and I doesn’t do a whole lot at this particular moment. My son’s diseases have no cures. No magical miracle from heaven will make his brain have the pieces it needs to work correctly.
His condition is on-going and non-curable. No amount of prayer is going to lift him out of this situation. Don’t get me wrong; I understand that people WANT to believe that somehow that a miracle could happen. However, this isn’t a practical prayer. If I spent my entire life praying for this to happen, I would be depressed and unhappy.
Instead, my husband and I choose to accept our life and my son’s health. Our family works tirelessly to find the best experts and doctors to manage his care. Numerous doctors collaborate to improve his quality of life. They reduce his pain and provide us with the resources to make his life easier.
As his mother, I accept his disabilities. I focus on helping him gain independence with adapted technology and equipment. I don’t fight the diagnosis at all. The diagnosis and prognosis are what they are. We are doing what we can do to help him thrive despite it all.
Please don’t pray for his complete healing.
Please don’t pray for him to be no longer disabled.
Don’t pray for God to fix my son
Our son doesn’t need these prayers. We don’t need that kind of pressure as a family to disappoint you when he doesn’t get better. Please accept my child and know he’s more than his diagnosis.
We accept his diagnosis and recognize that they have no cures.
What we need is for people in our lives to step up and take action. You don’t need to believe in God to want to do good deeds for others.
Some of the kindest people in our lives are atheists. They have provided us with companionship, help, and kindness to my son. They back up their words with action.
When people pray, I am sure they believe they are doing something to help our family. However, prayers are meaningless if there is no action behind them.Praying for us is a passive action. The prayers provide families like mine no immediate support or benefit. If I’m going to be sincere, prayers for my son and family don’t help us when we are drowning. What we need is action, what we need is some help, and we are the last to ask for help.
What can you do to help us or family like ours?
We need healthy food
Offer us companionship
Please show up and let us vent
I need a hug
We need a warm cup of coffee or tea in the morning after a night of no sleep
My family needs to know we aren’t alone
Our son needs friends and visitors
We ask that you stop praying and start doing for our family and other families like ours. Too often families raising children with disabilities are abandoned and forgotten, and they become isolated and alone.
Isolation has a way of messing with the mind, and caregivers can end up feeling frustrated, angry, and bitter at the world. We need people that are willing to dive into this deep end, give us a life raft, and swim us to shore.
Be the friend and companion you know you can be, and be brave knowing that helping a family in crisis will be an on-going task. It might not always be easy to be friends with families like ours, but we need friendship more than most.
Please stop praying for us. Please be there for us.
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