How to Prevent Grief over Special Needs from Morphing into Shame

My husband sang on the worship team so I sat alone during church services.  Sometimes I came late, sat near the back, and cried through one or two hymns.  My teenage daughter with autism was struggling with her faith and my other child missed church due to an undiagnosed illness.  I was grieving their difficulties and absence. A few people noticed and gave me a hug or a word of encouragement.  I appreciated those moments, but most of the time I was alone and few people knew about my grief.  Little by little I drifted out of touch with old friends because their children were doing well and mine were struggling.  Supportive friends had walked alongside my special-needs family for years—but this season felt different. I felt I shouldn’t be grieving AGAIN. I didn’t want pity from friends—it was getting embarrassing.  I wanted to feel like their equal—content as they seemed to be.

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Then little by little, I can’t say when, that grief turned into shame that further isolated me.  I had nothing to be ashamed of, but shame doesn’t care.  It accuses you and makes you feel guilty for things over which you have no control.  It tells you that something is wrong with you or your family which caused the struggle.  It makes you second guess your decision to give your child some space to sort out faith issues.  It causes you to feel guilt that your other child is sick.  And instead of reaching out for support, it makes you want to hide so others don’t ask about why your kids aren’t at church.  It makes you wonder if people are talking or wondering about you, and it leaves you isolated.

Appropriate shame (as a result of wrongdoing) has an offer of repentance or apology that leads to freedom and healing. FEELING SHAME WHEN YOU HAVE DONE NOTHING WRONG KEEPS YOU IN BONDAGE.  IT’S SATAN’S TRAP.

Something about illness and disability encourages shame to lurk closely– even if there is nothing to be ashamed of.  Perhaps it’s the association with weakness or dependency.  This connection doesn’t win friends and influence people in our culture.  And SHAME THRIVES WHEN LEFT ALONE IN THE DARK, AWAY FROM LIGHT, INTERACTION, PERSPECTIVE AND PURPOSE.  THE MORE WE ISOLATE, THE MORE SHAME GAINS STRENGTH.

WHILE GRIEF IS PART OF COPING WITH ILLNESS OR DISABILITY, SHAME DOESN’T HAVE TO BE.

Here are some ways to beat it:

  1. Know grief is not shameful—it is a normal part of life. To remember this, reach out to a few trusted people and/or seek counseling.  Speaking out loud what is on your heart takes power out of misplaced shame, stifling it’s growth.
  2. Know that difficulty happens to everyone and you are not exempt. Remind yourself you are not alone—or better yet, join a Bible study or support group where participants are willing to share their difficult stories so you will hear that you are in good company.
  3. Remember that God has good in store for you and your family. While you are not exempt from trouble, you were not created to cower in it.  You were created “to do good works which God prepared beforehand for you to do (Ephesians 3:5-6).”
  4. Consider how can your grief can transition to a good work.  Take one step in this direction (maybe talk about it?) even if you are not fully ready to commit or are unsure what it looks like.
  5. Speak truth to yourself and post it on your walls. Here are some Biblical truths to get you started.

Do not be ashamed  of your weakness (disability, illness, grief, idiosyncrasies) or of things that happen which are out of your control :

  • But he (Jesus) said to me (Paul), “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults. (1 Corinthians 12:9-10).
  • So rejoice when you suffer, for suffering produces perseverance, perseverance, character, and character, hope.  And hope does not disappoint us for God has poured out his love through the Holy Spirit, whom he has given us.(Romans 5:3-4)

Keep your hope and confidence in God as you grieve—don’t succumb to misplaced shame.

  • Israel is saved by the Lord with everlasting salvation; you shall not be put to shame.  (Isaiah 45:17).
  • No one who believes in the Lord will be put to shame. (Romans 10:11, 9:33)
  • For Christ, himself, is our peace (Ephesians 2:14)

The Force Beyond the Fog: Could Your Gray Day Be Evidence of Future Joy?

I don’t know how your holiday celebrations usually pan out, but yuletide mishaps occur in my life in similar frequency to other seasons of the year. I’m not complaining because I’ve learned much through these picture-imperfect years. Not to be outdone, the Crum Christmas of 2016 provided its own special wisdom.

First of all, a holiday get-away this year sounded especially nice because several new health problems have challenged our family in the last few months, and I was looking for some respite. So on Christmas morning our family of four embarked on a six-hour road trip to visit relatives. The adventure began when our older daughter, Katie, vomited three hours into the journey. I’ll let you imagine the details that parenthesized this event as we drove down a major interstate in California. The offending virus waylaid youngest daughter, Madeline, two days later, followed by my husband and finally me. All of us bit the dust before New Year’s Eve, although the flu was interrupted by some nice moments with family, I must admit. Some respectable family bonding still occurred, but to be honest most of us were more focused on disinfecting the house than on the joy of Christ’s birth.

After this turn of events, our first morning home from “Christmas vacation” was a relief. I set out to accomplish much–to put life back in order. As I do every morning, I pulled open the blinds to our backyard view of the Sacramento River. What I saw was a layer of fog resting over the water that spanned my view. I could see the haze of tree-tops on the far bank, but the remaining expanse was amazing gray mist. This is not atypical during winter in Northern California, but that morning it stopped me in my tracks.

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It was not that it was more beautiful than usual. I was drawn to the sight simply because God directed my attention toward the majesty of His creation—and how much bigger He is than me. I wanted nothing but to see that covering of fog and to feel the smallness of my being. Not small in a demeaning sort of way—but in relief that He is always more. More than circumstances. More than success or failure. More.

Beneath that fog lay many things that I love—running water, rocks, bushes, jumping fish, ducks, deer, the occasional otter, etc. I couldn’t see them clearly under that majestic gray cloak. And there was my lesson: Beyond a potentially dreary fog, even if I can’t see or feel it, life goes on and God is powerful to sustain it. That’s it. He sustains and defines us when we are healthy or ill and during each phase of life. I needed to stop and wrap myself in the truth and joy of it. This was the joy intended for Christmas.

Do you need the reminder that there is life beyond the gray when your vision is unclear or depression obscures the view? Life is uncertain and raising a child with a disability makes that crystal clear. While one day is manageable, the next may be a crisis. Your child’s challenges may seem overwhelming or you may have no idea how to solve the problems. You may feel panic, grief, or a heavy weight of responsibility.

When you experience difficulty, I want you to recall God’s gift of a fog-covered river and my lesson from Christmas 2016. If you feel a dense gray fog closing around your mind or spirit, and see nothing beyond it, remain confident! The hidden but steady force of the universe–our God–who loves you immensely– is keeping the desires of your heart alive until He finds the right time to reveal them. Keep your faith, brother or sister, for surely abundant life is not gone—it’s just hidden from your immediate view.

What is your take-away lesson from Christmas 2016? What if you really believed that the force beyond the fog was working for your good? Could your most gray day be evidence of joy to come? I think so.

 

Be still and know that I am God (Psalm 46:10).

Delight yourself in the Lord and He will give you the desires of your heart (Psalm 37:4).

 

Hopeful, Trusting, Confident and Calm

“Calm, assertive energy in the human –and calm, submissive energy in the dog”– that’s what Cesar Millan, the Dog Whisperer, strives to create in his work with dogs and their families.  I’ve recently watched a few episodes of his Family Edition show and it’s been enlightening.  Surprisingly, when Cesar is called in to “rehabilitate” a dog, a common part of his process is to train the humans in the family to relax. Dogs are masters of reading body language and other cues indicating human emotion, and they respond accordingly.   Because of a dog’s social-behavioral “pack” mentality, changes in the psychological energy of the dog owners (“pack leaders”) affect their canine friends in fascinating and almost miraculous ways. A calm and assertive human almost always effects a positive change in dog behavior. I think, in a similar way, a calm and assertive parent usually brings about positive behavior in a child.

While this might seem like a blog about becoming a calm and assertive parent (which is a good goal)—it is really about growing as a hopeful and trusting parent. Let me explain. My children are young adults now, but when my oldest “pup” was young and showing signs of autism, I responded with anxiety, tenacious research, and problem solving.  As time passed with misdiagnoses, limited local resources and other stressors, my anxiety increased. I soon learned that autism is not a puzzle easily solved.  Helping my child was too big for me to negotiate in my own strength.

Like many parents of children with social, emotional or behavioral challenges, I looked for the perfect combinations of therapy, medication and specialized programs to give me a sense of peace and hope for my child’s future.  I never completely found it there because people, systems and medicine are constantly changing and are sometimes more helpful than others.  While I longed to trust that God would provide and care for my child, His provisions were not always on the time table or to the degree that I wanted. This fueled my doubt, worry and hopelessness—and led to a more intense striving for solutions and answers. By the time I learned to turn over the burden of these issues to God, I had already worked myself into a hopelessness and exhaustion that I didn’t see coming. Without hope and confidence in a rock solid foundation, it was impossible to feel internally calm.

I didn’t realize the significance at the time, but regaining hope was a key ingredient to my ability to parent with “calm, assertive energy”, as opposed to “frantic, anxious energy.” Like many of the dog owners on Cesar’s show, I was not even fully aware of my intense internal striving.  One day I felt the overwhelming burden, however, and turned it over to God, dropping on my knees to pray for myself and my family.  I admitted to God that the problems were too big for me, and I asked Him to take them over.  Right then and there, I felt a burden lifted from my shoulders and I knew with certainty that God and I were in this together.  I was not alone– and neither are you.

I wish I could honestly say that I never took those problems back as my burdens, but I have.  However, now I more quickly identify my useless striving, and more quickly lean on God again.  If you took an honest survey from my kids, I think they would tell you that most of the time, I exhibited the external behavior of a calm, assertive mother.  I was not the yelling sort, or a complete pushover (at least not most of the time.) However, as calm as I may have looked on the outside, I was often behaving like a duck—appearing to peacefully glide upon the water while my legs were paddling crazily underneath. I know they sensed my internal state even if neither of us could explain it, and it most certainly affected our lives.  When I was actively listening to God’s directions, I was able to relax and feel so much more internal confidence and peace as a parent.  I learned that many things will not will work according to my plans and timing, but I know that God is in control and that I can trust and hope in Him to lead “my pack”.

You may find yourself in a similar place with your child.  Your problem solving style may be different, but in all cases it is critical to learn to calmly and submissively trust our Father in Heaven. The results may be nothing short of miraculous—for the peace and calm of the entire family.

 

Lately, a hymn has been on my mind and part of the lyrics keep replaying themselves into my soul:

 

“My hope is built on nothing less than Jesus’ love and righteousness,

I dare not trust the sweetest frame but wholly lean on Jesus’ name,

On Christ the solid rock I stand,

All other ground is sinking sand, all other ground is sinking sand.”

 

I pray that you ask for and listen to God’s calm and assertive voice so that you might learn to trust, hope, and be confident and calm as a parent. It will make all the difference.

 

“You will keep in perfect peace those whose minds are steadfast because they trust in you” (Isaiah 26:3)