The Invisible Diagnoses

Two completely different sets of struggles. Both invisible from the surface—from the onlooker’s eye.

A beautiful, outgoing child. His tender sweetness lost amidst his struggles. His fun, infectious personality disguised by his over-the-top energy. His charm misunderstood. His affection a bit smothering. His chatter bothersome. His clinginess problematic. Hidden behind his eyes is anxiety and confusion as his perception of the world differs from most. Things we take for granted do not come naturally for him. Everything takes work, even daily routine. There is no insight or judgment, hence the constant need for supervision and guidance.

Unless you know my son well most onlookers only see his negative behavior. He is not capable of regulating himself: his body, his emotions, his mind. His body becomes easily overwhelmed or confused by the information surrounding him.

If your world feels out of control, how to you deal with it? You have developed coping skills. Ways to calm yourself. Ways to help ease pain, fear or discomfort. Some of us buy a bag of potato chips and binge-eat the entire bag in one sitting. Or perhaps, like me, you prefer to eat a king-sized chocolate bar. Regardless of your method, you have developed a way to cope.

His disruptive behavior. His poor choices. His impulsivity. His body is constantly in motion. He is out of sync. His motives aren’t malicious, although on the surface one could argue. He longs to socialize with others, but lacks the know-how. He wants to be loved and appreciated, but often is seen only as the bad kid (some prefer undisciplined) and, at the very least, immature for his age.

It’s easy to label with little detail or information. We all do it.

He may hit his brother or take a toy—constantly. On the surface, it may look punishable. All boys do it, but you can’t let him get away with it, you may say. But what you don’t know is that he lacks the know-how to deal any other way. Instead of verbally addressing the issue of the younger brother using a swing that he has determined only belongs to the older brother, he will push the younger brother off the swing in an effort to help the older brother. He may demand his own way constantly and it looks like he’s an obstinate or controlling child. But what you don’t understand is that it brings him great comfort to control as much of his out-of-control world as he can. Rigidity. Inflexibility. Sameness. Routine.

Yes, I hear you. You’re thinking he still needs punished. You’re thinking he can’t be controlling. He’s the kid; you’re the parent. Here’s where the biggest disagreements fester. They’re found in the responses to his negative behaviors. You must establish the core of each issue. If the root of the behavior is sin, then it absolutely needs addressed. If the root of it is another cause, then help him through it. Give him alternative, safe, respectful, constructive ways to handle situations and cope with uncertainties and changes in his life. Teach him how to interact with others in a kind and positive way.

After a negative interaction with him this morning I swept a few tears into my dustpan along with the dirt from my floor. I handled it with frustration rather than compassion and love. I felt like a failure. Everything is so incredibly difficult. Every interaction. Every conversation, even unspoken communication. Nothing is easy. I was pleading to God, not out of pity, but out of heartache. Out of the isolation in which the struggles cause. No one understands…but God. I know this.

And then there’s me.

I’m a busy mother and wife, who follows God as best as a sinful human can. I strive for perfection in my life and in my house, all the while appearing quite healthy. But I’m not. You could assume, based on my clean and tidy house and the various hobbies and talents that I pursue, that I am not suffering. As you watch me walk without a limp, seem to have full use of my arms and legs and a brain which fully functions, that I do not struggle. But it requires energy that—without medicine—I lack, even for day-to-day duties like cleaning, laundry, self-care and cooking. It requires a body that regulates itself. A brain that communicates with its muscles to work in a fully functional way.

I long to be the energetic 36-year-old that my mind still feels, to run alongside my boys, but my body won’t keep up. I long to use the talents God has given me on a regular basis, but my body won’t cooperate. I long to eat healthy and exercise regularly, but the aftereffect is too difficult.

You see, this morning I was given the confirmation of a second medical diagnosis. Suspecting a diagnosis is one thing, but hearing the diagnosis is a little shocking. But once the shock wore off I realized I am functioning no worse than before I knew. I’m still managing each day. And so, I must focus on that.

As a woman who’s struggling with life-long, progressive diseases, I worry about my future. My mind is clogged with what-ifs and how-can-Is. As a mother of a child who struggles so intensely, I worry about his future. The worry is two-fold. (But still never too big for God!)

Invisible diagnoses can be more isolating than if they’re obvious. Invisibility invites the question of believability and truthfulness. It causes others to question the sufferer’s motives and excuses. It shouldn’t, but it does. Humans are judges, hypocrites and shamers.

Often, I’ve felt the need to validate my son’s diagnosis and mine. Why? I shouldn’t. I don’t have to prove anything. But the world is critical, unforgiving and harsh. We give plenty of room for judgments but none for compassion, understanding and support.

Perspective is everything. (It’s not only important to have a godly perspective for your own life, but also toward another’s struggle.) Make a gigantic-sized room for compassion and support.

No one has any idea how difficult my days are and how I even feel. It’s not a cry for pity, but a cry for more understanding to those around us.

Two Years

I woke up early this morning as I normally do and walked into my nearly-finished, newly-remodeled kitchen to make coffee for the first time. As I waited for my coffee to brew, I smiled as I looked down at the beautiful granite-looking countertops and appreciated all the hard work and love my husband put into this kitchen.

I took my coffee cup and sat it down in front of my laptop. There in front of me read, April 20, 2018. To some, that date means nothing. To me, however, it marks the most difficult day of my life. The day I said goodbye to my dad.

This blog has not come easy. It was hard for me to write what I felt, as my thoughts and emotions have been all over the place. So much is going on in my life right now. So many struggles, stress and emotions. This blog is long (sorry!) and it’s transparent, but here goes: Continue reading “Two Years”

Grace is Amazing!

Grace is more than surface deep—it’s complex. Google defines grace as the free and unmerited favor of God, as manifested in the salvation of sinners and the bestowal of blessings. Simply put, grace is getting something we don’t deserve. Often, it’s associated only with salvation (saving grace). We deserve the penalty of death because of our sin, but grace steps in and gives us life through Jesus Christ. Grace spares us from the cross and continues to walk us Home. It’s not bound by the sacrificial (and ultimate!) act on the cross. Grace breathes its sweet breath into every aspect of our life.

There is grace in all things, in our every moment, in our every breath. His grace works in us. His grace transforms us.

If we think we deserve everything good in life and expect to receive everything we ever wanted, we will miss all the grace which abounds. Yet even in our selfishness and blindness, God still holds out His hand and giveth more grace.

He gives the necessary amount of grace we need to get through each day. It may be a simple reminder, it may be a stamped envelope, it may be the sound of someone’s voice on the other line or it may be rain after a long drought. It may be comfort after tragedy, peace after distress, relief after pain, an answer after waiting, a break in the clouds, quiet after chaos, healing after a sickness, victory over a battle, spring after a long winter, the end of a trial, money you so desperately needed or good news.

God’s grace is there waiting. It’s peaceful, perfect, unending, limitless, matchless. Grace is freely given. Grace is greater than our sins and mightier than our raging waters. Grace strengthens when we’re weak. Grace silences our fears. Grace offers relief. Grace gives freedom and hope. Grace shields and protects. Grace doesn’t judge or discriminate. Grace endures. Grace sustains. Grace carries. Grace comforts. Grace forgives. Grace provides. Grace enables.

Grace may be the rainbow after the storm. But grace is also in the storm. Grace finds us in our troubled waters and allows us to see God. It meets us in the deepest valleys and carries us to still waters.

Paul had a thorn in his flesh. He pleaded with God three times that it should leave him. It didn’t. But after the third time, Paul wrote, “But He said to me, ‘My grace is sufficient for you, for My power is make perfect in weakness.’” (2 Corinthians 12:9)

Often our earthly struggles consume us. No longer can we endure. We cry out to God, “Please take it away!” But our answer is only silence. Be still, and know that I am God—as the Psalm says. His grace is enough. In our trials His power is demonstrated. Often, God’s grace is simply His strength carrying us through. It comes so softly that you must be still to know.

As the familiar song Amazing Grace sings…

Thru many dangers, toils and snares
I have already come;
‘Tis grace hath bro’t me safe thus far,
And grace will lead me home.
God’s grace is amazing. God’s grace is enough.

From the hymn Grace is Flowing:
Grace is flowing like a river; millions there have been supplied.
Still it flows as fresh as ever from the Savior’s wounded side.

2 Corinthians 9:8
And God is able to make all grace abound to you, so that having all sufficiency in all things at all times, you may abound in every good work.

Romans 5:2-5
Through Him we have also obtained access by faith into this grace in which we stand, and we rejoice in hope of the glory of God. Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.

Happy birthday, Dad!

What would I say if my dad were standing before me?

Many things have happened since you went to heaven nearly two years ago. The ups and downs. The good and bad and somewhere in between. I would have shared everything with you. You would have laughed and cried. You would have rejoiced. And other things would have saddened you, as they have us.

But I have seen God’s hand.

During the difficulties I have seen Him working His perfect plan for our lives. I have seen His faithfulness and steadfast love. Answers have come in the stillness of the night. Ways have been made when there was none. Truth has been our footing when all hope seemed lost.

God has seen us through it all.

That’s what you wanted for us, to see God through it. To see His goodness and grace. To not run from Him. To not be bitter.

Sometimes it’s hard, though. I have accused God of being unfair. Sometimes it feels as if I’m standing out in a downpour with no roof to run. I raise my skimpy umbrella only to see the panels have all been torn. I stand helpless, drenched and questioning God’s reasons.

But then my mind drifts back to the hospital when you asked us not blame God.

And the only cure for bitterness is thankfulness. To see the blessings even at their smallest.

I’m thankful for a God who gave His Son for me. A God who doesn’t give up on me. A God who still has a plan for me. A God who has prepared a place for me. A God who loves me. A God who may have taken you from our presence but placed you in His.

I’m thankful for what He’s given me. The grace for each moment. The air for each breath. A bed for every night. A kiss from my husband. A cry or giggle from each child. A hug from my mom. An engine that starts. A sunrise each morning. Food for my plate.

My dad—who had “everything taken from him”—wanted us not to be bitter at God.

And so, on your second heavenly birthday, I want you to know, I remember. I’m trying to keep my eyes on God no matter how difficult the journey. I’m trying to see the blessings, big or small. To not allow bitterness to steal my joy, cloud my judgment or discourage my hope.

Even today—on your birthday—as I have another test done to confirm what the doctors already know…Whatever may pass and whatever lies before me, let me be singing when the evening comes. Bless the Lord, O my soul. (Bless the Lord, O My Soul/10,000 Reasons)

Happy heavenly birthday, dad! I love you and I still miss you.

A Crown of Glory

No one wants to look older than they really are. No one. Let’s face it—the world tells us gray hair is a sign of old age. It’s not associated with being young and beautiful. And we go to great extremes to stop this unavoidable path.

I was only twenty-two when I spotted my first white hair. Yes, white! No gradual grays for me. I was horrified. Continue reading “A Crown of Glory”

A Girl Dreams

A girl begins to dream and plan her wedding from very young. She wears a long skirt and drapes a lacey curtain over her face, imagining a wedding gown and veil.

The flowers are everywhere. The sparkling white lights. Walking down the aisle in a gorgeous gown as everyone gazes upon her beauty. Standing beside her soulmate, her best friend, her Prince Charming. How magical and beautiful her big day will be.

And then there is reality. Continue reading “A Girl Dreams”