A chronic illness doesn't just affect the patient. It impacts their family as well. It's been nearly two and a half years since our son developed a debilitating nerve injury known as RSD (Reflexive Sympathetic Dystrophy), also known as Chronic Regional Pain Syndrome. The little understood condition is hard to detect and diagnose. Even though there are tell-tale signs including swelling, discoloration and temperature changes to the skin, RSD is often mistaken for a psychological problem rather than a physical one.
Our boy was unable to walk for months at a time and he could not even touch his left foot below the ankle without screaming in pain. Matthew successfully recovered only to relapse again and again. The most recent struggle came last week. He frantically called for me to come to his room. For the first time in a year, he was unable to touch his foot without experiencing what he described as a hot knife, burning and stabbing him simultaneously. His eyes betrayed an expression I recognized as fear and frustration -- mostly fear. He realized that despite months and months of medication, physical therapy and treatment, the RSD was coming back. None of us could say how long it would last nor how severe it would be this time. It could last for a week or for a month. Of course, it could even be much, much longer.
As a family, our periods of hope and fear have been bridged by faith that Matthew could and would recover once again. But that fight has taken a toll on all of us. Matthew has had his innocence interrupted, if not stolen completely by struggles which no child should endure. I watch his older sisters hold back tears as they watch their baby brother deal with the pain, fighting to recover. Matthew is 8 and 11 years younger than his sisters and as a result, their love for him borders on maternal. His mom and I have cried many nights, out of Matthew's view, so as not to further upset him.
Watching our child suffer is a unique experience. In some ways it is more exquisite and difficult to deal with than if the pain were in our own bodies. It is horrible. But we are mindful that, as bad as things are, they could be much worse. Matthew's condition is chronic, not terminal. That means there is hope and the promise of a full and complete recovery. Matthew is not in this fight alone. Matthew has great friends and understanding teachers. Fortunately, the principal at his school is unwavering in her support and compassion.
I cannot wait to talk about this condition in the past tense -- long after it is gone for good. Until then, we wait and watch and pray that relief will come soon for our sweet boy. Along the way, we will all support him, encourage him and love him. That's what families do.