Answers Part II
continued from my previous post, here...
**edited
For several weeks the illness runs its course. Just to be sure, on the advice of a nurse, we take him to a pediatric hematologist for further testing and rule out Leukemia. We let out a huge sigh of relief when this ordeal ends well. He is better and we are grateful.
Fast forward to my son's teen years. Bizarre, out of the norm for our sweet S., behavior begins. And so does our journey into the nightmare of schizo affective disorder and the brutal battle for treatment and support. A nagging thread begins to run through the years. What did we miss? Did something happen to him that we are unaware? We erroneously watch a video from our son's toddler and baby days. My husband and I weep. We are haunted. I am haunted, did something happen to his brain when he had H.S.Purpura? His head swelled unbelievably. Why didn't any of us think to scan his brain? Check for encephalopathy?
So I beg, I plead with every doctor and or nurse I meet. Could there be a connection? Can we test now? I push for CAT scans. Nothing. I push for blood work. Is it Hashimoto's Encephalopathy? Has anyone else with H.S.Purpura been diagnosed with a seriously mental illness? I post on obscure sites with questions. I "like" every facebook page associated with my suspicions.
But, nothing. No answers. For me at least.
Then my sweet, sick son asks me to stop. Stop pushing mom. "What's it going to tell us anyway?"
So I reluctantly surrender to his request. For now, I tell myself quietly.
Yet on a larger scale, I surrender to the Sovereign Ruler over all. My God. Again. For now. Because I know this struggle is not over, the struggle to understand, to have answers. It's a hard pill to swallow. To let go and accept. To be o.k. with the beautiful~terrible. My sorrow that comes and goes. Because when my son is doing well and he's lucid, I treasure those times only to lose a piece of my soul when he slips away right before my eyes and I can't do anything about it. When he pounds his fist on the counter top because he can't verbalize the terror in his brain. I'm a mom. I know it's bad. I want him near me, I want to put him back in my bed like when he was 5 years old and protect him from the pain. But I can't. We have to go forward. And I am comforted only by the fact that our forward is a glorious eternal one. At the end of this forward, a great King is waiting. Our Savior. And then the answers will come, but they won't matter anymore. Because we will be with Him.
As for the tangible, unexplainable peace I experienced on that day over 16 years ago? It is a mystery, just like my God and His ways. Ways that are always good, and always for my best. For my son's best. And for my family's best. I look back on it now and it still comforts me. I once thought God allowed the peace on that day so that I should try and search for the answer to his current illness, somewhere back there with the H.S. Purpura. Now, I'm not so sure. It could be that God was showing me to be o.k. with no answers, that His hand was on my son's life back then through that trial, and this His loving, guiding, sovereign hand is still on my son's life. Using all. Even the beautiful~terrible for our good, and for His glory.
Reminds me of a beautiful "Sovereign Grace" song that carried me through many dark days...
"What A Glorious Mystery"
VERSE 1
Who can comprehend
Your holy ways O Lord
Your glorious power without end
From which the stars were born
How could we ever understand
The moving of Your hand?
How could we ever come to grasp
The One who never began?
CHORUS
Oh, what a glorious mystery You are
Oh, what a glorious mystery You are
Though we only see in part
You’ve completely won our hearts
Oh, what a glorious mystery You are
VERSE 2
Who can comprehend
Your gracious mercy Lord
Great loving kindness that would send
A Savior to be born?
Why would you, Jesus, die for us
Who cursed Your perfect name?
Why would You come to reconcile
Those who caused Your shame?
Words and music by Stephen Altrogge
**edited
For several weeks the illness runs its course. Just to be sure, on the advice of a nurse, we take him to a pediatric hematologist for further testing and rule out Leukemia. We let out a huge sigh of relief when this ordeal ends well. He is better and we are grateful.
Fast forward to my son's teen years. Bizarre, out of the norm for our sweet S., behavior begins. And so does our journey into the nightmare of schizo affective disorder and the brutal battle for treatment and support. A nagging thread begins to run through the years. What did we miss? Did something happen to him that we are unaware? We erroneously watch a video from our son's toddler and baby days. My husband and I weep. We are haunted. I am haunted, did something happen to his brain when he had H.S.Purpura? His head swelled unbelievably. Why didn't any of us think to scan his brain? Check for encephalopathy?
So I beg, I plead with every doctor and or nurse I meet. Could there be a connection? Can we test now? I push for CAT scans. Nothing. I push for blood work. Is it Hashimoto's Encephalopathy? Has anyone else with H.S.Purpura been diagnosed with a seriously mental illness? I post on obscure sites with questions. I "like" every facebook page associated with my suspicions.
But, nothing. No answers. For me at least.
Then my sweet, sick son asks me to stop. Stop pushing mom. "What's it going to tell us anyway?"
So I reluctantly surrender to his request. For now, I tell myself quietly.
Yet on a larger scale, I surrender to the Sovereign Ruler over all. My God. Again. For now. Because I know this struggle is not over, the struggle to understand, to have answers. It's a hard pill to swallow. To let go and accept. To be o.k. with the beautiful~terrible. My sorrow that comes and goes. Because when my son is doing well and he's lucid, I treasure those times only to lose a piece of my soul when he slips away right before my eyes and I can't do anything about it. When he pounds his fist on the counter top because he can't verbalize the terror in his brain. I'm a mom. I know it's bad. I want him near me, I want to put him back in my bed like when he was 5 years old and protect him from the pain. But I can't. We have to go forward. And I am comforted only by the fact that our forward is a glorious eternal one. At the end of this forward, a great King is waiting. Our Savior. And then the answers will come, but they won't matter anymore. Because we will be with Him.
As for the tangible, unexplainable peace I experienced on that day over 16 years ago? It is a mystery, just like my God and His ways. Ways that are always good, and always for my best. For my son's best. And for my family's best. I look back on it now and it still comforts me. I once thought God allowed the peace on that day so that I should try and search for the answer to his current illness, somewhere back there with the H.S. Purpura. Now, I'm not so sure. It could be that God was showing me to be o.k. with no answers, that His hand was on my son's life back then through that trial, and this His loving, guiding, sovereign hand is still on my son's life. Using all. Even the beautiful~terrible for our good, and for His glory.
Reminds me of a beautiful "Sovereign Grace" song that carried me through many dark days...
"What A Glorious Mystery"
VERSE 1
Who can comprehend
Your holy ways O Lord
Your glorious power without end
From which the stars were born
How could we ever understand
The moving of Your hand?
How could we ever come to grasp
The One who never began?
CHORUS
Oh, what a glorious mystery You are
Oh, what a glorious mystery You are
Though we only see in part
You’ve completely won our hearts
Oh, what a glorious mystery You are
VERSE 2
Who can comprehend
Your gracious mercy Lord
Great loving kindness that would send
A Savior to be born?
Why would you, Jesus, die for us
Who cursed Your perfect name?
Why would You come to reconcile
Those who caused Your shame?
Words and music by Stephen Altrogge
Comments