Let’s be honest. In the world of severe disability, there are not too many good choices. At each crossroads there is a decision to make and rarely is it clear which path to choose.
Three years ago, sleep deprived to the point of near collapse, we finally gave into the option to give Oliver a drug that would force his brain to sleep. We chose Clonazepam, a highly addictive benzodiazepine that was far from ideal, but very effective. That choice changed our lives overnight. For the first time since his birth, he slept peacefully.
The year and a half before that had been wrought with trauma and torture for all of us. His screams lasted all night and, try as we might to find any supplement or method to help him, nothing did. We paced for hours, fighting the fatigue of our arms, trying to maintain the perfect rhythmic bouncing to calm his agitated brain in hopes of an hour or two of sleep. Often, we’d transfer him into the bed and he’d instantly wake up, requiring us to begin the entire process again. Over and over for 18 months, these early times left deep emotional and psychological scars on us all.
Two months ago, after his last hospitalization, the Clonazepam stopped working. Raising the dosage was no longer an option because the sedative effects were already bleeding over into his school and therapy life, making progress slow on all fronts. So, we followed the neurologist’s advice, started Clonidine and prepared for the Clonazepam wean. Instead of following the recommended 3 day wean schedule, I stretched it out to 2 weeks, knowing that this wouldn’t be an easy transition for him.
Last Thursday, for the first time in 3 yrs, Oliver was ‘Benzo’ free. As the levels have dropped lower and lower in his blood each day, his energy has skyrocketed. His communication is clearer, and his motivation is off the charts. His teacher has even sent emails home about how happy and alert he is this week in class. His therapists are amazed at how much more strength he has without having to fight the drugs for his energy.
But along with these improvements, his spasticity has increased, giving way to periods where he writhes in pain. He’s begun to sweat profusely each evening, becoming agitated, his body rigid with discomfort, repeatedly getting stuck in postures and completely inconsolable.
When I put him in front of his speech device to ask what is wrong, he says over and over, “Feel Afraid.”
And the terror of the nights has gotten progressively worse. His sleep is at best a broken, fitful doze and at worst, all out screams of terror that seems to be both psychological and emotional. I am struggling to maintain my composure as these awful sounds transport me back to the trauma of our first years. In my sleep deprived state of mind, the nightly panic attacks that have haunted the darkest hours of my night, threaten me once again. I am desperate to make it stop.
My heart breaks because my child is suffering, and I can’t fix it. Here we are, at another crossroads and again, and there is no good choice.
Do I put him back on a drug that steals his vibrance, his enthusiasm, and his full experience of this life, but allows him to rest? Or do I continue to push through this in hopes that we can find another way? How long will that take? Because this suffering in the darkness, his screams of terror… this is no quality of life either.
It’s these decisions I still struggle with the most. Which is the lesser of two evils? Will we always have to settle for one shitty choice or another? Sighhh… I’m so tired.
If I must force myself to find the silver lining in this situation, I suppose it is that we are lucky enough to live in an age where we do have possibilities. As evil and crappy as they seem, there ARE drugs at our disposal that have allowed us all to survive Oliver’s sleep issues. And I am very grateful for that.
Tonight, I remind myself…
“Stay patient, and trust your Journey”
This, too, shall pass.