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”

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”

Show Up and Let God

We tend to approach life’s challenges like battles. They are intimidating or possibly they don’t seem worth fighting so we’re tempted to completely avoid the battle. Or perhaps we fight—bringing our best efforts and weapons—only to fall short. We blame ourselves for not having prepared enough. We retreat—licking our battle wounds—as we ask ourselves what we did wrong and how we can come out on top next time.

But some of our greatest battles aren’t won through blood, sweat and tears. They aren’t won by overpowering or outnumbering the enemy. And they aren’t won by our strategic attack. Continue reading “Show Up and Let God”