As we were driving home from Cook's yesterday, the radio was on an 80's/90's station. Normally Todd and I love reminiscing our old glory days of high school/college with each song that is played. Suddenly the first few notes of the next song made both of us chuckle. Oh! The glorious Bette Midler. We laughed how preachers (back when this song was released) loved using this big hit song "From a Distance" as the main focal point of their sermon. We quickly began talking about something else, and I never thought about it again....
Until this morning.
You know how songs, even silly ones like this one, get stuck in your head? Well, all morning I've been humming it; then appalled at myself when I realize what I'm singing. ha!
"God is watching us from a distance...."
Pure blasphemy right? Of course! That's why all those preachers loved using it as an illustration back 30 years ago.
But this morning and most every day of the past 40+ days, I think my heart has been believing this lie. Not in full, but pieces of it. This summer Caed has experienced so many things that liken an old (horrible, unwanted) friend. Been there. Done that. A thousand times over and then some. The awful abdominal pains, the frailty of his body, the logs I have to keep of everything entering/exiting his body, the scary rides to the ER, the hospital admissions, the blood draws and countless procedures/tests, each time his gurney is pushed through "the double doors," and the fears of living each day not knowing what lie ahead...
Yet in the same breath, Caed has experienced brand new things this summer. We are now having discussions with doctors regarding new organs/issues. This week, it all came crashing down on me like the weight of 10 men. It wasn't anything specific. It was the tremendous sadness of seeing Caed where we have seen him so many times before. As he fell off to sleep one night, lying peacefully in his hospital bed, it was just the two of us. The lights were dimmed, the night shift had taken over, and it seemed as though the whole 5th floor was at peace. Instead of crawling onto the "comfy" couch to catch some Zzz's myself, I was suddenly overcome... The quiet. The stillness. It hit me, hard.
The only word that comes to mind in describing my heart at that moment...was exhaustion. Not physical tiredness, although I have definitely been stretched paper thin this summer in that area. But rather, emotionally. I'm speaking solely for myself, but guessing most parents (of kids with medical issues), live with a highly guarded heart. After the initial shock of your child's diagnosis wears away, it just becomes the norm. It's simply how you live, day in day out. Medical jargon and various procedures/medications don't faze you like they once did. They are now routine. We have always felt this way with Caed. And I have always found myself performing various "nurse duties"with large thick walls around my Mama Heart. Do the job. Don't "think" about it, even for a second. But then there are those moments, sometimes just split seconds, where I think the Lord purposely tears down a portion of that Great Wall so that we don't become hardened. Pain, grief, sadness. They unfortunately are not just unwanted villains during trials, but are necessary characters that need to be confronted and even embraced. He knew my "tough exterior" heart needed to feel. Tears needed to fall. Grief needed to be released.
I let my heart cry a few silent tears that night. Not just for the things Caed is currently having to endure, but ALL OF IT! Every ounce of pain and suffering that he has been forced to swallow the past 11 years. It's an enormous amount, and as a parent, it's paralyzing to watch. The past few weeks, I honestly have felt as Bette Midler infamously sang, "God is watching from a distance...."
As I have previously shared, there has been an enormous amount of pain and suffering in my circle this summer. Not just Caed and our family, but also my precious friends, Marilyn and Colleen. I struggle, a lot! Tremendous guilt, in knowing either of them would trade my world in a heartbeat! They would give anything for an HSP diagnosis. Oh, how I am reminded of this truth daily! Yet, it's not "my suffering" compared to "theirs." It's all of it. Every tear I have been forced to shed this summer is wearing on my soul. "Where are you God?...Why Caed (again!)...why Marilyn!!!...why Devin! What on earth is your purpose?"
Yesterday morning, it came. Just like it has so many times before, and with certainty, will again in the future. The doctor finally brought us the news we had been waiting for/dreading. The biopsy results. Her thick accent was a mixture of beauty and frustration. We painfully strained to not miss a single syllable. I had her repeat herself several times just so I could hear it again. The results overall were...good. Not great. But, doable. We would have much work to do over the next few weeks/months, but it would be ok. The high wire balancing act of HSP + SBS (complete opposites in dietary needs) would be our greatest challenge. What's ideal for one is bad for the other, and vice-versa. Overwhelming thoughts spun wildly in my head. Again, "God, where are you? This isn't making sense. How are we supposed to handle both of these diseases simultaneously?"
With impeccable timing, my phone alerts me of a message. My stomach is still tied in knots of both joy and sadness. We are going home! But...heading there not only with the same issues we had when we walked in, but new ones to add to our already overflowing plate. As I opened the message and began reading, I couldn't believe it. It was exactly what I needed to hear. The exact things that I had been wrestling with all summer. "God, you say you are near....but I don't feel you anymore."
He was answering me. (through the obedience of the Spirit's prompting from my dear friend/co-worker, Kim)
Lysa Terkeurst - (excerpt from) "When Pain Leads to Praise"
"...I now have a completely different picture of God standing beside my hospital bed. He wasn't ignoring me. No, I believe it took every bit of holy restraint within Him to not step in and remove my pain. He loved me too much to do the very thing I was begging Him to do.
He knew things I didn't know. He saw a bigger picture I couldn't see. His mercy was too great. His love was too deep. Indeed, He is a good, good, Father.
He was not far off like I'd imagined I lay there with pain. He was near. So very near. Just like David tells us in Psalm 145:18, "The Lord is near to all who call on him in truth."
He was loving me through the pain. It was necessary pain - life-saving pain I can look back on now with new eyes. It's given me a whole new outlook on the times when God seems silent.
His silence was part of the rescue. And now I see pain as a reason for praise. "
So, I laugh again at the silly lyrics of Bette Midler's 1990 hit song. He's not leisurely sitting back watching. He's alive. He's acting. He's allowing/not allowing things into my life and the lives of those around me for a beautiful God-glorifying purpose. He's not far away. He's so very near. Orchestrating every meticulous detail, not to harm, but to bring good.
He's a good Father who only writes good stories.
Lord make my heart believe this truth, every day!
