Wow – it has been a while – over 2 years. As always, I write for me and sometimes it is not pretty (you have been warned).
As we celebrate Genevieve’s 8 year anniversary of her first open heart surgery, we are adding another diagnosis to the laundry list of labels placed on an almost 10 year old girl. AS – aortic stenosis, AR – aortic regurgitation and now CRPS – complex regional pain syndrome to go along with anxiety, sleep issues and so many other invisible battles.
At the moment, I am finding CRPS to be the most difficult – and this comes from a mother that has placed her daughter in the arms of a surgeon and allowed him to stop her heart not once, not twice but three times. This is the one that I have not yet wrapped my own head around.
According to the Mayo clinic: “Complex regional pain syndrome (CRPS) is a form of chronic pain that usually affects an arm or a leg. CRPS typically develops after an injury, a surgery, a stroke or a heart attack. The pain is out of proportion to the severity of the initial injury.”
For Genevieve, it has meant a full arm cast followed by a hinge brace for an arm that was hurt in a fall but not fractured, an air cast and crutches for a turned ankle. . . repeated x-rays of a wrist that has been painful for over 8 weeks, temperature differences from one hand to the other and most recently pain between her thumb and palm that make it unbearable for her to hold a pencil. When Genevieve is feeling good, she is unstoppable as one of the fastest swimmers at camp, climbing walls and tackling ropes courses. Unfortunately, when the pain is present, she is in tears begging us to make it stop, screaming that it is getting worse and not understanding how neither the doctors at Boston Children’s Hospital nor her parents can seem to help.
To know me, is to know that I am a researcher – all those years of working at Lucy Robbins Welles Library trained me well. Unfortunately, what I am learning is terrifying. Perhaps more so than her congenital heart defect. The pain can be so extreme, so out of proportion with the injury, that it is comparable to child birth or the amputation of a finger. I am still letting that sink in.
There are other fun facts such as “no cure” – the best we can hope for is remission with the knowledge that any injury (or surgery) could trigger it again. Some children struggle with depression, atrophy, bullying, self injury and suicide. Terrifying. I am trying to focus on the positives, given that her symptoms started in March / April, we discovered it early (never doubt a mother’s intuition) and we are working with the Pain Clinic at Boston Children’s Hospital – one of the only places in Massachusetts that treats children with this condition.
I feel like I am on a tightrope – trying not to “medicalize” an injury that I know is not a fracture, not something that can be treated with a cast or immobilization while not dismissing the fact that her pain is real. My focus is on helping her build a strong mind and techniques to find peace as she works through it. I have gotten sucked into the “In Search Of” reboot on the History Channel with Zachary Quino. The episode on superhumans and the ability of Shaolin Warrior Monks to control their pain through meditation is fascinating. I am not sure Genevieve found it as interesting when I confiscated her iPad and made her sit on the couch watching it. Wonder how she will react when I enroll her in training at a Buddhist temple?
I have experienced the judgement – I know she looks great in photos, I know that she is bearing the weight of her body on her wrist, throwing a ball, riding a bike . . .she has some pretty good days. Perhaps that is what they mean by complex, it is definitely complicated. When it is bad, it is very bad to the point that I almost do not recognize her but when she can handle it, Genevieve is powerful. If I feel this from my own friends, what will she encounter from her peers? If I struggle to find the balance of supporting her yet not calling 911 every time she trips over her own feet, how can I expect her teachers to understand?
There are more questions than answers and lots of trial with hopefully not too much error as we figure out what will help Genevieve to live happy. For tonight, I am thankful she is here and celebrating all that she has already conquered. Nothing has changed – she is meant to be and we do not journey alone. With the love of our family and friends, we will push on – survive and thrive.