A Greater Thirst

Anger. Frustration. Pain. Exhaustion. Desperation. Helplessness.

These are feelings no one wants to experience on a regular basis. I am a "peace lover" by nature, so the anger is especially hard for me to swallow. Over the past few weeks these feelings have each been taking their turns in my life on a consistent basis. Preston is having nocturnal seizures again and though it seems he is the one who would suffer the most from this mentally, in reality he is unaware of the events, leaving me as the one who is finding it hard to cope. There is incredible peace that comes when your child has found rest from a trial and over the years Rees and I have felt that for Preston many times. However, along with the peaceful times come those heart wrenching moments when one of us awakens to the return of his nocturnal seizures and as the fog of our sleep lifts it hits us like a punch to the gut that... they're back. "God, nooooo," I pray. "Make it stop. Just let him sleep. Make this a bad dream." But for whatever reason that only God understands, it is real. And it is back. Now. Again.

I called his neurologist's office on Monday morning and spoke with her nurse. She said she would talk to Dr. ElZind and get back with me in a few hours. The day passed and by closing time when I had not received a response, I called them back. As you can imagine, when your child is going through this, the thought of even one more night of it is unacceptable and you want help immediately. The receptionist assured me that the nurse would be calling me back soon. Closing time for the office came however, and I did not get a response. I tried my best to be patient on Tuesday, waiting until 2:30 to call again and I was assured that I would receive a return call from the nurse by 4:00. When 4:15 rolled around and I had still not received help I called back. Finally I was connected to Dr. ElZind's nurse and she explained that the her discussion with Dr. ElZind had resulted in the determination that Preston was at the maximum amount of his current medication for his weight and she would need to add another medication to try and resolve the situation. He would need to follow up with blood work in two weeks to check his levels and she would follow up with a visit in three weeks. Wednesday evening, 30 minutes until closing time, I was informed that the pharmacy had still not received the order for Preston's new medication and with the neurologist's office closed for the day I faced the reality that we would go through yet another night without help.

Why are people incompetent? Do they not sense the urgency here? What if this was their child? Would they be as careless? Aren't the doctors and nurses supposed to help us? What do you do when you can't get help from the only people you know who are capable of helping? God, why do You not excerpt your power in this situation and prod those who can help me along?

Today is Thursday. Preston's seizures seem to be getting worse by the night and last night he was literally hurting himself. I sat by his bed helpless as he scratched his face, dug at his eyes with his fists and banged his arms on the headboard and wall in a fit I could not wake him from and my anger and frustration grew. I know that God chooses not to heal or give rest sometimes, and with that I can trust Him because His Son suffered for us. I know that He has felt the pain of not being able to rescue His own Son from the death that had to occur for mankind. For me. He knows my pain. He knows far deeper pain. And His reasoning and purposes I will never challenge. But it still hurts. It is still hard.

This morning, as I returned home from taking my other kids to school I called again and demanded to speak directly with the nurse's supervisor. She assured me as she stood next to Dr. ElZind's nurse that the medicine had indeed been prescribed but had never been called into the pharmacy. She apologized over and over and assured me that as we spoke it was being sent electronically and should be ready for pick up as soon as the pharmacy could fill it. As I backed my car into the garage Laura Story's song "Blessings" came on the radio and I burst into tears. God's presence was with me in a tangible way as I just sobbed for what felt like an eternity. The anger, frustration, despair and helplessness just all poured out as I listened to the words I have heard so many times.

We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love is way too much to give us lesser things

*'Cause what if your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You're near
What if trials of this life are Your mercies in disguise

We pray for wisdom
Your voice to hear
We cry in anger when we cannot feel You near
We doubt your goodness, we doubt your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we'd have faith to believe
*

When friends betray us
When darkness seems to win
We know that pain reminds this heart
That this is not our home
*

What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst this world can't satisfy
What if trials of this life
The rain, the storms, the hardest nights
Are your mercies in disguise

"Blessings" by Laura Story

What IF a thousand sleepless nights are what it takes to know He is near? I can praise Him in knowing that the aching of this life is indeed "the revealing of a greater thirst this world can't satisfy."