Reader Beware: Transparency Up Ahead

Andrew is in one of his episodes right now! He has been for the past few days. We are dealing with the possible diagnosis of Kleine-Levin Syndrome. This basically means that every 3 weeks or so, Andrew slips away from us. He almost becomes autistic in that he doesn’t talk much and he’s in his own little world. He doesn’t really show any emotion, except for agitation. He looks at us with blank stares. And he sleeps…..A LOT!!! For those of you who know Andrew, you would know this is not typically how Andrew behaves. He is generally an active, jovial, wants-to-be-part-of-the-action kind of kid! But when he is in these episodes, he’s not himself. He’s a shell of a person! Usually a couple of days before he starts these episodes, he’s aggressive much more than usual with us. He gets easily frustrated by the slightest thing that doesn’t go right!

Depression looms on the horizon during these times! It threatens to engulf me! It taunts me with doubts and fears. This unwelcome guest sits and waits for me to spiral downward in my thoughts and focus on all that is not right in my life. I struggle spiritually during this time. Giff and I feel alone and isolated. Lies of the enemy take root unless we are vigilant about replacing those lies with the Truth! My youthful idealism of what my life would be like had to go! Reality has a way of taking you down a notch! But I have found that in this place of “one notch down,” God’s grace allows my spiritual eyes to see Him as He really is. He’s not the dispenser of all good things at my whim. Yes, He does indeed love me; however, His love is fierce! Nothing comes in my life that hasn’t first passed through His hands! He wants me to know Him intimately for Who He is, not just for what He does for me! He has many names. One of them happens to be “El Roi”– the God Who sees!

Even as people overlook us or Andrew, He sees! He sees the injustice in this world toward those who aren’t “normal!” He sees the hot tears that fall from my face as I contemplate Andrew’s future without us! He sees Andrew’s successes in putting on his socks for the first time without freaking out about it. He sees Andrew get excited about being together as a family watching a movie. He sees those who reach out to us to help carry our burden when the load gets heavy. HE SEES!!! He sees the scars on my arms from Andrew scratching me. He sees the heartache we experience when strangers come alongside us more than some family members. He sees the struggle his brothers have in loving Andrew yet being embarrassed by his behavior in public. HE SEES!!! God’s look validates our experience! It isn’t diminished by His sovereignty! God doesn’t tell me to grow up and deal with it. He loves me in the middle of it and gently leads me.

Unless you have a special needs child, you don’t really know what it’s like. But that doesn’t mean I don’t need other people! I do! We do! Friendships during these past 5 years since Andrew’s diagnosis have been handpicked by God! Friends who are just there for us no matter what. Friends who may not know how to help but hang around anyway. Our lives have been enriched by these people deeper than they probably know. Some of those friends have moved away! Because of attending a different church, we no longer see some of these people.

Knowing I’ve been struggling lately, Giff blessed me with this picture! I LOVE IT!!! In case you can’t see it, it says: “Life isn’t about waiting for the storms to pass…it’s about learning to dance in the rain!”

“Life’s not about waiting for the storms to pass…it’s about learning to dance in the rain!

Casting Crowns – Praise You in This Storm lyrics

I was sure by now, God, You would have reached down
And wiped our tears away,
Stepped in and saved the day.
But once again, I say, “Amen!”
That it’s still raining!
As the thunder rolls,
I barely hear your whisper through the rain,
“I’m with you!”
And as your mercy falls,
I raise my hands and praise
The God who gives and takes away.

[Chorus]
And I’ll praise you in this storm!
And I will lift my hands
That you are Who you are
No matter where I am
And every tear I’ve cried
You hold in your hand.
You never left my side!
And though my heart is torn,
I will praise you in this storm!

I remember when I stumbled in the wind
You heard my cry. You raised me up again!
My strength is almost gone. How can I carry on
If I can’t find you?
And as the thunder rolls,
I barely hear you whisper through the rain
“I’m with you!”
And as your mercy falls
I raise my hands and praise
The God who gives and takes away

[Chorus]

I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord,
The maker of heaven and earth
I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord,
The maker of heaven and earth

[Chorus]

I can still choose to dance even though it’s raining!

Lord, let my dance be a celebratory dance! My anchor is secure on the other side. This life with all of its burdens and heaviness on earth is but a vapor. “For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all” (2 Cor 4:17). “We have this treasure in earthen vessels, that the excellence of the power may be of God and not of us. We are hard-pressed on every side, yet not crushed; we are perplexed, but not in despair; persecuted, but not forsaken; struck down, but not destroyed— always carrying about in the body the dying of the Lord Jesus,that the life of Jesus also may be manifested in our body” (2 Cor. 4:8).

In the midst of the downpour, God taps me on the shoulder and asks,

“May I have this dance?”

2 Comment

  1. Julie, Thank you so much for being so candid and pouring out your heart and soul and allowing others to have a glimpse of what it’s like to be in your situation. I love that you cry out to God and that you know He is your Comforter and your Strength. I love how God is clearly revealing to you that He is right there in the midst of all these struggles and that He alone has it all under His control. Even though I don’t know what it’s like to have a special needs child, I do know what it’s like to love your kids so much it hurts at times, especially when something happens to them that you have no control over. I thank you for sharing this too as it will be a reminder for me to keep you all in my prayers. God’s loving arms are around you and as He’s told me recently I will also tell you….don’t look to the left, nor to the right, but look straight ahead and keep your focus on HIM and He alone will see you through….He alone will sustain you…..He alone loves you unconditionally! I love you too!!

    1. Thanks, Auntie Ruth! What you wrote meant alot to me, especially your word at the end about not looking to the left or to the right but keeping our eyes straight ahead and fixed on Him. So good! I love you, too!

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