What My Family Needs is Help Not Empty Prayers

What My Family Needs is Help Not Empty Prayers December 24, 2018

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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  • The Bofa on the Sofa

    One thing that I am struck by in the passage from James is his example of “works.” When he talks about doing good deeds, he doesn’t say “avoiding sin” or “don’t be gay.” So even James, who is the basis for the “faith without works is dead,” tells us that those “works” involve serving others, and aren’t about yourself.

    It means that when people claim they have to discriminate against gay people for their faith, it’s not based on James. It’s all about their bigotry.

  • Absolutely! And when they passively pray to God – they are not serving anyone but themselves.

  • MystiqueLady

    My brother and SIL had a child that was born with Down Syndrome and a missing heart valve — and those were the least of his problems. He had a debilitating stroke before he was one. Unfortunately they had wedged the church between themselves and the rest of the family — so that any offer of help was accepted with strings (for example, since their other children are both autistic, they could only be watched by my parents — and there were loads of “rules”, like nothing that mentioned the real age of the earth, evolution, or fossils). But yet they had the whole church praying for this child — he died shortly after he turned two. (Oh, and he WAS not my brother’s child.)

  • The Bofa on the Sofa

    But yet they had the whole church praying for this child — he died shortly after he turned two.

    Apparently their faith wasn’t strong enough….

  • I’ve heard “you just aren’t faithful enough.”

  • I am so sorry! I really wish people wouldnt’t allow faith to divide their family relationships. But I guess since the church wants followers to be subordinate and non-thinking- they are told to put the church before everything else. Gah. I’m sorry. That must have been hard on your family.

  • The Bofa on the Sofa

    And the problem is that you can’t protest such treatment, lest hear the “It’s nothing personal….”

    Oh yes, it was.

  • MystiqueLady

    Thanks — it was, and more so when we learned that the child was not fathered by my brother.

  • I can bet that must have been a HUGE blow to him

  • MystiqueLady

    Yes — but he knew before the baby was born. And, yes, she had an amniocentesis done and they knew the baby had several birth defects, and was informed of the odds against a healthy live birth.

  • Wow. Fetal termination based on fetal testing is tough. Even pro-choice moms like me struggle with that. Had I known during pregnancy about my kiddo – I still would have had him.

  • Jim Jones

    Why Did God Create Atheists?

    There is a famous story told in Chassidic literature that addresses this very question. The Master teaches the student that God created everything in the world to be appreciated, since everything is here to teach us a lesson.

    One clever student asks “What lesson can we learn from atheists? Why did God create them?”

    The Master responds “God created atheists to teach us the most important lesson of them all — the lesson of true compassion. You see, when an atheist performs an act of charity, visits someone who is sick, helps someone in need, and cares for the world, he is not doing so because of some religious teaching. He does not believe that God commanded him to perform this act. In fact, he does not believe in God at all, so his acts are based on an inner sense of morality. And look at the kindness he can bestow upon others simply because he feels it to be right.”

    “This means,” the Master continued “that when someone reaches out to you for help, you should never say ‘I pray that God will help you.’ Instead for the moment, you should become an atheist, imagine that there is no God who can help, and say ‘I will help you.’”

    ETA source: Tales of the Hasidim, Vol. 2: The Later Masters [Martin Buber, Olga Marx]