Waiting for Beautiful: Making Peace with God’s Agenda When It Hurts

I checked my computer each hour for several days. First it was to see my daughter’s medical test results as she is sick with a diagnosis in progress. Next it was to receive a message from her doctor about the findings. After waiting a week, we finally received news that a clear diagnosis and solution is yet to emerge. She has been ill for six years. I’m disappointed, frustrated, and brokenhearted as I continue waiting for something to help her.

We left for Bible camp a few days later. I watched the kids there energetically interact, and I watched my daughter pace herself. As the kids hang out together, my daughter stays close to her parents. Over time the illness has led to isolation followed by social anxiety which has stolen some of her confidence. The reality sometimes saddens me to the point of tears.

Then one evening my eyes went past the kids and staff at the camp and settled upon a cluster of the amazing, tall pine trees of the Sierra Nevada mountains. The sun was peaking through and it forced me to look up. Up toward heaven—toward the Father—and away from the situation at eye level. AS I LOOKED UP, I WAS REMINDED WHO GOD IS. HE’S A LOVING FATHER AND HE KNOWS WHAT HE IS DOING.

I’m struggling with this situation in a big way, but deep down I believe He has a reason for what he has allowed in my daughter’s life. I am trying to trust His timing regarding the hopes I have for her. Perhaps what I want and see as beneficial is not as good as I think it is. Perhaps she was created for a special purpose that requires this difficult season. Or perhaps the timing is still not right. But I hold on to my hopes like precious jewels. I want to see her thrive. Releasing my grip is going to require a powerful intervention.

By His grace, God’s words came to me this week, Ecclesiates 3:1 spoke some patience into my heart. “There is a time for everything and a season for every activity under heaven…What does the worker gain from his toil? …(God) has made everything beautiful in its time.”

CAN I WAIT FOR THE BEAUTY THAT GOD HAS PLANNED EVEN THOUGH IT HURTS NOW? Without meddling, do I have faith He will bring something good from the suffering that has passed?

John 16:33 says, “I have told you these things so that you may have peace.”

WILL I LET GO OF INTENSE PROBLEM-SOLVING IN ORDER TO HAVE THE PEACE GOD INTENDS FOR ME? For me this is an act of will. It takes a strong and purposeful redirection of my natural inclination.

In Jesus Calling by Sarah Young, she writes as if Jesus were speaking this concept to us in person. She says, “Stop trying to work things out before their times have come. Accept the limitations of living one day at a time. When something comes to your agenda, ask Me (Jesus) whether or not it is part of today’s agenda. If it isn’t, release it into My care and go about today’s duties.”

The action steps I see in this paraphrase of God’s directions are this:

STOP TRYING SO HARD
ACCEPT THE LIMITATIONS OF TODAY
ASK GOD ABOUT HIS AGENDA
RELEASE MY AGENDA INTO GOD’S CARE LORD, WHEN I’M WAITING FOR BEAUTIFUL, EVEN WHEN IT HURTS, GIVE ME STRENGTH TO RELEASE MY AGENDA AND TO INITIATE YOURS.

Preview POST COMMENT…

Wanda Parker 2 weeks ago

Thank you, so well said.

I am in the process of learning to mourn/lament so I can dance. I read that it is impossible to dance until we have mourned our losses.

In the midst of all God has taken me and is taking me He led me to first lament the loss of something small – my garden. He had given me a beautiful garden for a few years, now He has taken me to a place it is impossible to have a garden. The years since He took it I haven’t been able to even look at pictures of the garden – then one day they just started popping up on my screen saver (at the same time He had introduced me to mourning so I could dance). I am amazed what I am experiencing as I mourn the loss and it takes me to a place of dance. I pray He will lead me to do the same with the many other truly painful losses; as well as the childhood fairy-tale dreams that never happened.

Julie VB 2 weeks ago

Thank you so much for this. I am going to check out your blog now. I have two kids with special needs, but we are in a very similar situation with my daughter. She is going through some difficult symptoms and we have yet to understand the cause. I am feeling really distraught now. This post spoke to me directly. Thank you.

Karen Crum 2 weeks ago

Denie– Thank you. I really needed to write the message to sort through my grief, as well. As hard as it sometimes feels, God is trying to strengthen us and our children for some good work.

Denie Sidney 3 weeks ago · 1 like

I REALLY NEEDED this today. I thank God for sending this message through you.

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.

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:

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.
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.
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).”
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.
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)

Silencing Your Inner “Super-Parent” to Hear God’s Voice

The tension in my neck felt like a vice had been attached across my shoulders. After umpteen hours of research, calling medical offices, and chasing lab results, I reached my limit of special-needs mom stress. Acting as (a diligent, and yes, sometimes obsessive) case manager, nurse, researcher, decision-maker and counselor all in the same day (or hour) can become overwhelming. I knew I reached that point last week when I yelled at the cat (poor old guy was just in the wrong place at the wrong time).

The truth is that I find it hard to wait patiently for answers. I dislike ambiguity regarding the well-being of my children, and working to figure things out is in my nature. This can be a good thing, but there comes a point where work has diminishing returns and mainly brings about a state of physical or mental exhaustion with little progress toward the goal. I am the poster child for this scenario.

I finally had sense enough to pull myself away from computer research and took a warm bath. As the buoyancy of the water supported the tight muscles in my neck, I again asked God to forgive me for trying to solve my child’s medical problems with supermom skills that are often not super at all.

This intensely active problem solving and subsequent repentance is not new for me. The first time I walked the supermom wanna-be path was when my husband and I were seeking a diagnosis for our two-year- old who had autism. That was 20 years ago. This time it’s on behalf of our 22-year-old who has undiagnosed medical problems. Clearly, I’m not as far along in my spiritual development as I could be. I regret how often I may have drowned out God’s voice with my intense efforts to learn and seek expert opinion.

AND YET, MY FAILURES HELP ME REALIZE THE NEED TO STOP—TO PRAY—AND TO LISTEN. AND GOD HAS NOT FAILED ME OVER THESE PAST 20 YEARS.

Does this mean I get everything I want? No. Does it mean that God has immediately answered “yes” to every prayer. No—not by a long shot. What it means is that God has always provided strength and enough provision over time to keep my hope alive and to sustain me and my children.

So here are the questions I must ask myself:

Why do I act as if I alone must secure resources for my daughter? Do I believe God will not work His will for my daughter without my help?
Do I believe that God is so skimpy with His power and provision that I must micromanage my daughter’s care?
When will I know that my due diligence in advocating and researching is enough—and that it’s time to let go of fear and to trust?

Thankfully, a friend (who read Luke 12:27) reminded me that wild flowers in the fields do not toil for their survival, yet our Heavenly Father sustains them. He dresses them more elegantly than the most powerful Kings in the world. The flowers simply bask in the sun (or tolerate the rain) as he provides for their needs and dresses them in an extravagant way. To think that God might do this for us and our children is extraordinary!

As we make decisions for our children, it’s not always easy to discern our role in the process and to be sure of our choices. However, it is clear that we have stepped over the line when we feel worry or overwhelming burden over anything (Phillipians 4:6-7).

For me, it’s time to intensely seek God (not answers) through a quiet and attentive spirit and to watch in awe and thanksgiving as He directs my path (Proverbs 3:5-6).

LORD, HELP ME SILENCE MY INNER SUPERMOM SO I CAN HEAR YOUR VOICE.

What Special Needs Parents Need to Know About Grief, Hope and Faith

Spring has sprung, but part of me isn’t feeling like sunshine and flowers. Life feels disappointing as my husband and I are seeking, but have no answers, concerning our child’s chronic illness. I cannot begin to tell you all the prayers that have gone up and yet our daughter still is experiencing disabling medical problems. Sometimes when things are going well I’ll allow myself to dream about her future, but for the moment it’s difficult.

I know it’s not wise to wallow in discouragement so I won’t. However, before I attempt to move us emotionally and spiritually forward, I want to acknowledge the reality of grief for a moment. Yes, we need to count our blessings, but the pain we and our children face is real too. I hope you and I feel free to grieve for a time before we get up again to face challenges (and maybe fight) on behalf of our child or family. Sometimes people try to speaking healing into our situations without acknowledging our loss—and it’s not helpful. God understands, however. He is near to the brokenhearted (Psalms 34:18). That said, he also has provided us with faith and hope for our victory—so to them I will return.

Pulling up your “faith and hope bootstraps” is not easy when you are grieving. As a young mom, I remember being baffled by the concept of “hope,” thinking it was just wishful thinking in the face of a brutal reality. But, for whatever it’s worth, here’s what I learned when I studied and diligently sought God on these issues:

God watches over those who hope in him (Psalms 33:18). He sees you and your child. Don’t doubt it.
The biblical definition of hope means that we expect to receive what we hope for. Hope does not disappoint us (Romans 5:5). It’s not the same as a wish.
Faith is the currency, substance and power to receive what we hope for (Hebrews 11:1). It’s our job to trust–and God’s job to produce outcomes.
If we are lacking the faith to truly hope, walking through trials while seeking God can actually help. Suffering produces perseverance, perseverance, character and character, hope (Romans 5:2-5).
In the end, what we hope for is not the lasting victory, faith is the victory (1 John 5).

I cannot begin to understand how God works through these mysterious concepts, but I do know this: DISCOURAGEMENT FLEES WHEN WE HAVE FAITH THAT GOD IS GOOD AND THAT HE WILL REWARD OUR HOPE. So, in response:

Today, I will trust God with my hopes and dreams for my child. I will not stuff them away where they cannot hurt me but will allow God to modify or fulfill those dreams at his will.
Today, as discouragement gnaws at my heart, I will fight for courage. I will choose hopeful thoughts and wait on the happy ending that my good God has planned—in whatever way and in whatever time He chooses.
Today, even through tears, I will look to His face for what I see there is power and grace.

THANK YOU, LORD, FOR FAITH AND HOPE.

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When Christians Wound Our Special Need’s Families

When my lonely middle-schooler with autism apologized to the girls in her class regarding some prior behavior, she was met with a cool silence. As a mom there to lend support to my daughter, that silence was one of the most emotionally painful moments I have every experienced. Katie’s words all but begged for understanding and hugs but no one budged from the circle on the gym floor. Only one sweet girl told Katie she understood and would always love her. God bless that girl!

Still—I was shocked and wounded at the global lack of support from my daughter’s PE teacher and her classmates at the Christian school. Katie had demonstrated courage to face the class with an apology but the response was cold indifference instead of grace and forgiveness. I don’t blame the girls. It was the teacher’s duty to lead her students in extending grace and care to a wounded soul. I am as sinful as anyone, so any fingers I point come right back at me. However, after the tears finally dried in my eyes, I wrote this poem to help me heal from that excruciating experience. I hope it might get passed on to someone who will be prompted to respond more compassionately in a similar situation.

IGNORING THE SHEPHERD’S CALL

The Shephard dove in to save his little lambs
From murky waters
He dove into disease, sin and outlandish behavior

He brought them out of the mud
The well, the sick, the stained, the hurting
And He washed them clean with his robe

The ones who were already saved
Are called to dive with the Shepherd
To restore the lost and rejected

But out of fear
They substitute love
With modest clothing, neat hair, and empty words

They stay where the water is clean
Where they can see the bottom
And the dirty lambs drown

The Shepherd cries for his black sheep
Still stuck in the mire
For He loves them

But the white fluffy sheep
Will not take His strength
To carry them out of the mud

Dear children, let us not love with words or speech but with actions and in truth. I John 3:18.

“Good” Special-Needs Parenting Might Be Easier Than You Think

Failing my children with special needs in some important, life-altering way used to be one of the looming fears over my life. Myriad problems not easily solved triggered anxiety and misplaced guilt. The quest to be a good parent put me (and maybe puts you) on edge because the stakes are high, and it’s hard to know when good is good enough. Hindsight is golden, however. After almost 25 years of special-needs parenting, some of them spent beating myself up over my faults, I’ve come to a hard-earned peace. No doubt, special-needs parenting is still one of the most challenging things you will do, but our thoughts often make it more difficult than necessary. It would have been so much easier had I believed the following truths (deep, deep in my heart).

YOU, YOUR CHILD, YOUR SITUATION AND GOD’S TIMING CREATE A UNIQUE PACKAGE THAT YOU CANNOT ACCURATELY COMPARE TO ANOTHER’S PARENTING PACKAGE.

It’s easy to watch other parents guide their children and either feel inferior or superior depending on what you see happen at a certain place and time. However, reality is that the skill or personality trait that looks like “good” parenting will appear different in another time and and situation.

For example, when my daughter was a pre-schooler with autism, to me a “good” mom was energetic, talkative and playful (able to meet the demands of intensive early intervention). When my kids needed special diets, nutrition minded “foodie” moms looked ideal. When an IEP needed to be developed or services fought for, I valued critical thinking and tough-minded advocacy. At other times, flexibility and compassion were important. I think you get my point—specific skills and personalities do not determine “good” special needs parenting—they are simply tools we use at different points in time. I see this bigger picture now, but as a younger mom I yearned for skills or personality traits I didn’t have and worried that my children would suffer due to my deficits. The reality is that eventually your strengths will come into play. In the meantime, God has given you an opportunity to stretch and to watch Him fill in the gaps.

We have different gifts according to the grace given to us (Romans 12:6)
My grace is sufficient for you, for my power is made perfect in weakness (2 Corinthians 12:9)
God promises to complete the good work (of parenting) that he began in you (Romans 12:22)

“GOOD” PARENTING MEANS DOING YOUR IMPERFECT BEST TO RAISE YOUR CHILD. YOU ARE NOT CALLED TO PERFECT PARENTING BUT TO A SACRIFICIAL LOVE DESIGNED BY GOD OUT OF HIS WILL FOR YOUR LIFE.

As you imperfectly care for your family, know that the particular sacrificial love you are called to live out will be different from that of other parents. Love for your child (and God’s love for you) might call you to any variety of things.

Some examples may include a call to change careers, or to work more hours or less. You may need to extend your patience and to keep a gentle tone of voice during a child’s meltdown. Your loving sacrifice might look like flexibility or, on the other hand, more consistency. Love may tell you to respect the needs and desires of your child even if they are different from your own (within reason, of course). One of my sacrifices involved embarking on a period of home-schooling, which is something I swore I could and would never do. As you live out sacrificial love, you will have seasons of frustration, and you will make mistakes, not always living up to your calling. Keep trying anyway because God promises that our sacrificial love covers many flaws.

Therefore, I urge you, brothers and sisters, in view of God’s mercy, to offer your bodies as a living sacrifice, holy and pleasing to God (Romans 12:1)
Love suffers long and is kind (1 Corinthians)
Love each other deeply because love overcomes a multitude of sins. (1 Peter 4:8)

GOD REWARDS VASTLY DIFFERENT BEHAVIOR THAN THE WORLD. LET HIS VALUES BE THE MEASURE OF YOUR PARENTING SUCCESS.

Here are just a few examples of the differences between a Godly vs. worldly perspective:

God doesn’t expect our children to be ultra-involved in school (or youth group), to take college-prep courses, or to look like the American ideal. He expects us and them to: “act justly, to love mercy, and to walk humbly with (our) God.” (Micah 6:8)
God doesn’t think ideal circumstances are necessary for our happiness. Instead, He says, “Give thanks in all circumstances, for this is God’s will for you in Christ Jesus.“ (I Thessalonians 5:18)
God is not looking for instant success. However, He is pleased with our perseverance and trust when things look bleak. “Let us not grow weary in doing good for at the proper time we will reap a harvest if we do not give up.” (Galations 6:9).

I hope this helps. If so, let me know in a comment– or tell me about what makes special needs parenting easier for you.

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.

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).

Grateful for Well-Enough

A few weeks ago I spent the day with my daughter in the emergency room. She is 22 years old and her blood pressure was 190/130. Yes, I wrote that correctly—190/130. Thankfully medication brought it under control, but since then our focus has been trying to discover the source of the problem. How quickly life and perspective can change. We discovered the high blood pressure at a routine visit to the dentist on a Monday. That Monday I was thinking about a college my daughter might attend, and by Wednesday, of medical procedures she might undergo.

Last week, after many doctor’s visits, blood tests and scans, I needed a good cry. It came when I went to bed. As I cried, I thanked God for keeping Madeline safe as she walked around like a vascular time bomb—primed to explode at any time. I thanked him for her sweet and gentle spirit, kind heart, and sense of humor. God knows my previous requests on her behalf to overcome chronic fatigue and anxiety. But that night, I told him it was okay, that I was thankful for things just as they were.

WHAT IS IT THAT MAKES US PEDAL BACKWARD IN THANKSGIVING WHEN WE ARE FACED WITH NEW CHALLENGES? DO WE SPEND MORE OF OUR TIME WANTING BETTER FOR OUR CHILDREN INSTEAD OF BEING THANKFUL FOR WHAT IS ALREADY GOOD?

Some of that is natural—we want the best for our children. And some of it is that we are trying to meet expectations set by ourselves and others. In my case, my kids are doctor’s kids. There are expectations for them to be well-spoken, well-educated, well-groomed, and just plain…well.

But life happens—and kids are born with autism (my other daughter) and they are gripped by anxiety and chronic fatigue. And when our friend’s kids go to college and find jobs, ours struggle or dabble in those things—with baby steps. For many years I have been thankful for baby steps, but now I’m also thankful for mishaps that have not happened, illnesses that have not struck, addictions that don’t exist, and abductions that never occurred. I will be content with autism, anxiety, occasional depression and chronic fatigue. I will be thankful for girls that get along better than ever. I will even be thankful for cats and dogs who constantly cover my furniture with a layer of fur. They have brought my children joy and comfort—what’s to complain about?

And get this (even though it’s a bit off-topic)—Just before my daughter and I went to the ER, my ophthalmologist husband brought Madeline’s beloved dog into his human clinic to get a close look at the dog’s infected eye. I’m thankful that he and his Harvard-trained partner were willing to wrestle a border collie/lab for an eye exam. Can you picture it? Brown dog—tail wagging—border collie busy–in an ophthalmic exam room. Who does that but a loving father? It was a weird day on all accounts.

The beauty of weird days is that they make you yearn for ordinary days—even ordinary days that are not perfect—and sometimes downright difficult or almost unbearable. I know—I’ve been there. When do we decide our ordinary days are not acceptable? If pain or violence are involved, they are probably not. It’s the in-between days that keep us stumped. Are those days well-enough? When do we accept a situation and just be thankful for the good– and for the bad that hasn’t happened? I don’t know. It’s very personal.

NONETHELESS, THE LESSON I LEARNED OVER THE PAST FEW WEEKS IS THAT SOMETIMES WELL-ENOUGH IS ENOUGH. IT’S IMPORTANT TO BE THANKFUL FOR WHAT YOU HAVE NOW BECAUSE LIFE CHANGES ON A DIME.

Just so you know, my daughter is doing better now that her blood pressure is down. She is not having the headaches that plagued her for weeks. Tests are underway because we don’t yet understand the problem.

Well-enough. I’m grateful for it.

…And Grace My Fears Relieved

Amazing Grace is one of my all-time favorite songs. Written by a former slave-trader who lived a less- than-stellar life before he met Christ, this usage defines grace as God’s eternal, life-saving, undeserved favor. The origins of grace in Latin are related to thankfulness—and in Greek, to rejoicing.

truth-and-grace

God is characterized by His grace. And he is thankful and rejoices over us when we recognize and accept his graciousness (Isaiah 62:5). In return, we are to be a thankful and rejoicing people (Isaiah 61:10).

Today I am that sort of person—thankful and rejoicing because of God’s grace. Just recently He handed me a week full of blessings for no particular reason as far as I know. I think He just loves me:).

But before I describe the blessings, I need to mention the contrast of the week before last. That week was characterized by fear.

I know fear. It is a gift (not!) I give to myself. Anxiety may be a better word for what I experience, but fear is the core emotion. This time it was brought on by the anticipation of an anniversary trip with my husband to the New England Coast. The trip itself was not the stressor. The stressor was preparing for the trip and feeling okay with leaving the kids at home. Special-needs moms know this stress well. Will the kids adjust? Will they behave? How will the caretakers handle a meltdown? Will they recognize critical signs or symptoms? What if the plane goes down or my husband or I don’t return from our trip? How will anyone else help my children when only I know what they really need?

Our kids are actually young adults now so they took care of themselves when we traveled this time. That in itself is a a measure of God’s amazing grace, although it also brings into play its own set of concerns. One of our children still can get seriously anxious and depressed when we leave—but nobody else would know because she’ll rarely share those feelings with others. The other child relies on us for complicated decision-making, and sometimes, for basic common sense. These kids are not ready to live on their own without their parents picking up and piecing together some missing links. This means I am still concerned about the plane going down.

I have one other fear related to travel. It’s almost too silly to mention, but I’ll do it anyway. I have a fear of bringing the wrong stuff on the trip. Trivial? Yes. Logically worth worry? No. But my brain obsesses about what to pack. It gets stuck on color, style, function and being prepared for potential inconveniences or discomforts. Unfortunately, I do this on most every trip and it always stresses me during the week before our departure.

The only good part of this repeating fear is that every time I travel, God relieves the anxiety. As soon as I get into the car or airplane, God seems to cover my journeys with undeserved favor and blessing. The preparation is done and I suddenly become aware that everybody and everything within my sphere of responsibility is under God’s control. This brings joy and relief. But aren’t those things under His control even when I am in my busy mode of preparation? Yes. Absolutely yes. But I see them more clearly when I physically drive away from my sphere of influence.

Maybe that’s why I noticed when God extended three particularly sweet gifts on this most recent trip.

While we were gone, a friendship was forged between our daughter, Madeline, and the acquaintance/friend she invited to keep her company while we were away. The willingness of this friend to spend the week with our daughter was a tremendous gift in the first place because Madeline has been without good friends since she developed chronic fatigue, followed by depression and anxiety, six years ago. This friend’s name is Grace. Yes, really. Her name is Grace.
The second gift was that, for the first time ever, we didn’t receive an anxious call from our daughter while we were away. Can I tell you how long we have waited for that moment? I’d say about 16 years.
As for me, I packed just the right attire. We had beautiful weather, two safe and easy airplane flights, and a great week of Fall color and sight-seeing.

AS SPECIAL-NEEDS PARENTS, WE FACE CHALLENGES THAT OTHERS MAY NOT, BUT THE CHALLENGES BRING OPPORTUNITIES TO SEE GOD’S GRACIOUS HANDIWORK (BIG AND SMALL) WHEN HE DECIDES TO EXTEND IT.

What big or small worries are defining your days right now? Is there relief in sight? It is easier to see God’s grace and provision when under a short-term stressor like travel, but I have been through stressors that lasted for YEARS without relief. I get it. Still, I’ll leave you with these thoughts:

Never give up hope that God will extend some undeserved favor toward you or your loved ones. If you tend to worry, take the next step and trust God anyway. You may or may not feel completely relaxed, but deep down, your heart will be at peace.

Next-

Watch for it, because God (now or later) will show you His amazing grace.

Finally-

Be thankful, joyful, and tell the story of grace and your fears relieved.

Busting the Scary “Mom”sters

It’s almost Halloween and scary is in the air. I’ve seen frightening decorations, costumes, and bowls for Halloween candy. But scary parents came into my mind today. Not the kind dressed up like witches or goblins, but the normal looking and mild mannered sort of people who might have sudden angry outbursts. Now, that is scary–especially to a child with autism. Who would do a thing like that? Well, way back when–occasionally– me.

I’m not proud of it, but I recall having some scary “mom”ster moments when Katie, my daughter with autism, was small. I had a moment when she had been crying for a long time and I was alone with no help. I had another moment during her potty training which took much longer than I expected and wanted. I don’t recall the details of those events but I remember frustration, anger, and an occasional raised voice. Of course, it’s effective to yell at an infant or preschooler (not!). Especially with kids with autism, loud or frustrated voices just increases anxiety and cause behavior to further deteriorate.

Years later I was frustrated with parenting so I picked up the nearest unbreakable object and slammed it down several times on the dresser in my bedroom. I thought this was a better alternative to yelling. And it was. Except that the object was a DVD case and the dresser was solid maple. It was a hand-me-down dresser (I hesitate to call it an heirloom) from my husband’s grandfather. I forgot that the solid maple dresser had recently replaced our veneer and plywood dresser from Goodwill.

Today, the scars on the dresser reminded me of the scary side of myself. I could tell you worse stories, but you hardly know me so let’s take it slowly. The point is that the behaviors of children with autism can sometimes take parents past the brink of self-control. I remember feeling horror at myself the first time I realized that I could really hurt my child if I didn’t pull it together.

This isn’t a fun topic. But research shows that kids with disabilities get hurt by family members more often than typical kids.

Special-needs parenting calls for a lot of maturity and self-control that we have not necessarily developed before becoming parents. We have to learn it in a crash course—and it is really difficult.

If you are struggling with this, the main thing to do is to admit it to yourself and to someone you trust. It doesn’t make you a monster. It means you are human. But you have to get help one way or another.

During my difficult times, I prayed a lot. I also read a daily written promise committing myself to remain calm, no matter what. I looked for new ways to help keep my daughter calm as her peace kept me calm, as well. Counseling would have been my next step if things had not improved.

If you sense “mom”ster coming out, plan her demise now. I never throw pitches into my blogs, but this is an unusual month, so I’ll go for it. I have a helpful chapter in my book, Persevering Parent, for parents who are behaving badly in response to their child’s social, emotional or behavioral challenges or disabilities. In it, you’ll learn more about me and my scary behavior, but you’ll also learn how moms like us can move on to bless our children in the way God intended.

Finally, keep it foremost in your mind that God is for you and your children. He’s on your team. He’s given you a spirit of power, love and self-control just for these most challenging moments of your life (2 Timothy 1:7). Claim it, live it, and the “mom”ster won’t last long.