There are 1000 different situations in which a special needs parent will need to summon superhuman strength. Today was one of those times for me.
We agreed to do a special session of Cuevas Medek Exercises (CME) today with the woman who trained many of the Napa therapists. I honestly can’t say enough positive things about this therapy method. I believe in it wholeheartedly, feel that the theories behind it are grounded in an intimate knowledge of how the body and mind communicate and are proven by actual success. It has always been the therapy Oliver responds to best and I have seen real change in his life as a result. So when the therapists offered us this opportunity, I was excited and hopeful for what might come from it. But excited and hopeful are probably the last words I would use to describe the experience we had during the 45-minute session with her today.
She started out with an exercise that hangs the child upside down. One of the goals of the these exercises is to integrate the infant reflexes which, in a child with a brain injury, often never integrate as they should according to typical development. One of Oliver’s most troublesome persisting reflexes is his Moro reflex (or the startle reflex). This causes him to feel as if he’s falling suddenly, throwing his arms open, legs straight and stiff and screaming with terror. He goes through periods when this is so extreme that we literally cannot walk away from his side or it initiates and he completely freaks out. Since his seizure about a month ago, he’s been struggling a lot with this.
From the moment the therapist slid him off the table he threw his arms out and began to scream. To other people this might have sounded like a tantrum, but to me that particular cry means terror and brings forth all of the trauma buried in my soul from years past. Hearing this causes a flood of vivid memories of night times that seemed like they’d never end and day times that were just as hard. It means he’s suffering and he’s begging me to fix it. To my ears, it is the worst sound in the entire world.
But I stood by during the first exercise and watched, hoping he would calm down and work through it. With the second repetition, came an even louder cry. I silently begged her to end this exercise but she didn’t. She laid him on the table and told him that he still had one more to do. Every cell of my body hated this woman in this moment. I wanted to scream at her ‘Don’t you understand he’s scared?! Can’t you hear the terror in his cry?! Don’t you understand that he has no voice to be able to plead with you to stop?’ But I didn’t ask any of this. I reminded myself that I trust this place and these people entirely and I know they want only the best for my child.
She moved on to the next exercise and with each rep his cries intensified. He repeatedly locked eyes with me, begging me to save him. I could feel his frustration and see the confusion on his little face. My heart felt like it was breaking. Although Oliver doesn’t speak with words, he tells volumes with his eyes. He was begging me to take him away from this woman’s arms to cuddle and snuggle him and let him be done for the day.
As she moved on to the third exercise the cries stepped up another level and I felt the rage of an angry mother tiger arise within me. I got the overwhelming urge to rip my child from her hands and run out of the building to the safety of the open air. But I reminded myself not to make a scene. I reminded myself that these people know what they’re doing and that they work with other kids just like Oliver every day and wouldn’t put him in harms way. I reminded myself how much I value this place and it’s people and the support they all so willingly offer my son.
So as the tears stung my eyes, I swallowed the giant lump in my throat and told myself No. You can’t run from this. Stay in the fire. Trust this process.
My stomach began to turn sour and I could feel vomit rising in my throat, almost as if my body was revolting at my mind’s demands to stay in the room. It’s a very strange thing to ignore such strong urges to keep your child free from suffering. I’ve noticed that when I have to stifle these powerful desires, a part of me begins to shut down emotionally and actually completely dissociates from the situation.
For the middle part of the session I stood back closer to the wall and could feel myself leaving the room. Not physically but emotionally, spiritually… like my soul just couldn’t take another moment of this. This is the second time I’ve been aware of the sensation of leaving my body. Both were during times of intense stress that reawakened the past traumas of our experience with Oliver. I think it is my body or maybe my minds’ way of protecting me. To an outsider it probably just looks like I’ve gotten very quiet but to me, it’s like everything freezes and time stands still. My body becomes motionless, backed against a wall. I am free from thought but also aware of the feeling of my eyes being wide with worry and an absolute inability to participate in what is going on. This is such a strange yet profound occurrence.
After about five minutes I snapped out of it and felt myself come back into the room. The sudden realization that I hadn’t offered him any encouragement or comfort while I’d been gone brought up a feeling of guilt.
So I moved toward the therapy table and began talking to him again, assuring him that it was almost over and that he was doing a great job.
I find these times to be some of the hardest because they force me to be absolutely confident in the choice I’ve made to put him into a particular situation. If you haven’t figured it out from my writing I am a terribly NOT confident person. So being sure of any decision I make is pretty rare. When I see him suffering like he was today I question everything. If I had this much trouble dealing with it, what must he be experiencing?? Total abandonment from his mother? Terror? Fear? Sadness? Frustration? And then I turn inward and blame myself and re-enter the grieving process. I grieve for how much support he needs and for the unfair decisions I must make about his health and well-being. So many of the things that we are now facing, as he gets older, tighter and bigger are really unthinkable options. I’ve learned that there is never an easy choice in the special-needs life… they’re all hard. They all have different consequences or side effects or mayfix one thing but agitate another. But this is the life we lead. This is our path. And perhaps these are simply opportunities to heal that wildly unsure part of myself. Who knows? But since I am on a quest for self-development I am going to take it that way.
As the session neared its end, Oliver became a little calmer. He was still crying but the terror screaming had stopped. He still locked eyes with me repeatedly begging me to get him out of there. But he was finally participating in the exercises. That’s the end goal… To integrate those reflexes that cause such issues and help the child learn how to manage the triggers in their life while moving in a functional way. Seeing him somewhat accomplish this in the end reassured me that it was the right decision today, even though it had felt so wrong. If his therapists don’t continue to push him he will not progress. That is the simple truth.
I was so emotionally drained by the end of this 45 minutes that I barely thanked the woman who had gifted his therapists with the next steps he will need to move forward. I left the room and could feel the tears that were no longer willing to be contained. I handed Oliver off to his next therapist who assured me they would begin the session with some cuddle time and take everything slowly. I stepped out for some air and before the door had even shut behind me, hot tears began rolling down my cheeks. As uncontrollable sobs liberated themselves, I felt fully the sadness, anger, frustration, grief, love, and Hope of our unbelievably complex life.
This is the path of the warrior
I’ll have to face all of this 1000 more times and I know it. The Botox injections, the surgeries, the pain he will endure during his life here on earth will not be for the faint of heart. But each time we come through these things together I feel the strength and bond we’ve forged over these hard years and know that we will continue to find the courage to fight. I hope with all my heart that Oliver knows I only want the best for him. I hope he understands, when he begs me with his eyes, why I can’t come to save him. It is an impossibly hard thing to be this version of a mother… but I will keep trying… because I love him.