Charlie is Entering Unknown Territory
A LITTLE BACKGROUND
For those of you who are new to my Help Charlie Heal posts, welcome. Charlie is my second child, 10 years old as of this publishing, and a stroke survivor. For a clear understanding of what Charlie is battling, here is a post about the extent and severity of his brain damage. He also has an unrelated condition called Craniosynostosis. But since having craniofacial reconstructive surgery in 2011, this condition has not interfered with his well-being. His stroke and the damage it left in its wake (Cerebral Palsy, Hemiplegia, Epilepsy, developmental delays, etc.) are the main focus of our care-giving work now.
I haven’t written about Charlie in a while. I suppose that’s because he’s been so stable over the past three years. In February of 2017, he began to show signs of walking. By Christmas of 2017, he was walking without support. We were thrilled. So was Charlie. It didn’t happen overnight. We all worked tirelessly toward this goal. We hired therapists, we bought equipment, we submitted Charlie to botox injections, we invested in walkers, and we did everything we could afford to do. At 8 years old, he was finally on his feet, standing on his own, stable, and moving through free air. It gave us hope that perhaps he was making the shift towards a more mobile and unencumbered life.
A MOMENT ON THE ICE
A few weeks ago, Charlie had a very common accident. He slipped on some ice with an assistant at school. It was just dumb luck. It could have happened to any of us. He and his assistant caught themselves and stayed on their feet. But we’re pretty sure Charlie tore a ligament or a muscle.
Most 10-year-olds can understand that they’ve hurt themselves and that now they need to rest their body. They can connect the source of their pain to the moment of injury. They can comprehend that the adults around them are going to administer care and healing. But none of this is true for Charlie. He is disoriented. He continues to move his body in painful ways, not connecting the hurt to his movement. He is a afraid of anyone who might touch him and trigger this pain. He is angry. He is lashing out verbally and physically. And he is also re-injuring himself. The worst of it is that his over-toned body, twisted from 10 years of Cerebral Palsy, will not relax and allow the tissues to heal. They are forever strained, pulled further and further apart, and in a state of torque and tension. Healing is going very very slowly. And I wonder sometimes if he is healing at all.
A MORE PRESSING ISSUE
Something else is happening concurrent with Charlie’s moment on the ice. Remember when our neurologist in Dallas warned us about what the onset of puberty might be like for Charlie? Here’s a quick recap: Charlie’s brain hemorrhage created scar tissue that extends backwards and forwards into the frontal lobe. This front portion of the brain doesn't develop until puberty and we were told to prepare ourselves for lots of neurological change when Charlie reaches Jr. High age. Most kids go a little nutty around that time, but our doctor explained that Charlie may also have to contend with an uptick in seizure activity, depression, compounding learning disorders, personality disorders, behavioral issues, and more. Charlie is only ten but we are already seeing most of these signs. Why? Because one of the side-effects of long-term exposure to Trileptal (Charlie’s anti-convulsant) is early onset of puberty.
For the past three weeks, Charlie has been in visible pain. He has also been swinging wildly from calm and quiet to frustrated and enraged. He is hitting, pinching, biting, and screaming through most of his transitions (from bed to clothing, from home to school, from activity to meal, etc.)
BACK IN THE WHEEL CHAIR
The most telling physical change is that he has stopped walking. This shift from 100% walking to almost no ambulation is largely due, we think, to his pulled ligament / muscle on the ice. But it may also have to do with the fact that Charlie suffers from severe pelvic torsion, which manifests as low back pain, buttock pain on one side, back pain that shoots into the ankle or the foot, an exaggerated spinal curve, which affects his posture, and also a leg length difference. This condition also affects his digestion, which has been a major source of pain and difficulty.
Charlie has not needed his wheel chair in over a year. And last week, we had to dust it off and make it available to him. Of course it was way too small due to Charlie’s profound growth. But after a quick post on Facebook to our community for ideas, the local Eagle Valley ambulance station reached out and were able to fit Charlie into a loaner wheel chair for the time being.
WHAT NEXT?
As you can imagine, we have lots of questions. We are worried about managing Charlie’s chronic musculoskeletal pain. We are wondering how to quell his erratic and sometimes violent behavior so that he can attend school and live his best life. We are curious about therapies that might help ease his digestive woes. We are concerned about his mobility and agency over his own body. We are heartsick that he frequently seems trapped in his pain, which manifests as seeming emotionally unreachable.
Jack and I will take Charlie to see his neurologist and orthopedic specialist in Boise on April 9th for a full work-up and strategy session. In the meantime, he has a wonderful physical therapist from Baker City visiting us in Halfway who has been doing some hands on work, which also includes Myofascial Release techniques. (That seems to alleviate some of his tension and pain for a while.)
I offer all of this as a way to keep you informed about Charlie’s well-being and also the state of our family. We are, as you can imagine, exhausted and feeling strung out. Walker has been incredibly upbeat and engaged, but it’s a lot to ask of a 13-year-old. Jack and I are well and connected and united in our efforts to support Charlie, but we’re also heart-broken and scared and in a state of temporary free fall.
This is a cycle that so many parents of special needs kids find themselves in. They spend months and years figuring out how to be present and effective and consistent with their medically fragile child, then the game changes. It doesn’t mean that we can’t do it again. It just means that Jack and I have drawn the card on the gameboard that sends us back to the beginning.
Thank you to everyone at Charlie’s school who are supporting our care-giving efforts. And thank you to Debi, Jon, and Tami at Eagle Valley Ambulance Services for Charlie’s new wheel chair.
For those of you who are interested in contributing to Charlie’s care fund, you can always do that right here: www.paypal.com/paypalme/HelpCharlieHeal.