in his shoes
It’s not too often that I reference a previous blog posting to provide context for the next but in this case I am doing just that. It’s not required reading but I think if you stop and click on Camp Courage you will thank me later.
What many of you already know is that Neurofibromatosis (NF) is a very complex genetic disorder that manifests itself in a myriad of ways. Jack has a brain tumor, a plexiform neurofibroma in his left orbital area, and a NEWLY discovered plexiform neurofibroma in his right orbital area. Like many others, Jack suffers from low muscle tone and some gross motor skill challenges. Despite all of that and through his courage and determination, Jack persists and lives his life. We won’t talk about the countless stares and questions that he endures because through his grace and skill he manages that well too.
What we have been concerned with for the past 8 months or so is Jack’s fatigue. As I said, NF is complex and lead to many different maladies. We couldn’t figure out why he was suffering so and was so lethargic almost daily. You know us, we don’t sit idly by and “wonder”. Beth and I seek answers, good or bad. We went to see a pediatric orthopaedic. We visited his NF doctors and spoke to others. We ordered more MRI’s and were now exploring the previously unknown lower part of his body for signs of tumor growth. That anxiety is always fun. We were seeking answers and were not finding them. His MRI’s (thankfully) came back mostly negative. He has a few smaller tumors but nothing that would be causing his fatigue and pain when he walks.
Imagine. 13 years old and getting out of bed to go to middle school and your feet are in such pain and you don’t know why.
Thankfully, his mother is persistent and just won’t give up on helping our boy. Days would turn into weeks and he would complain on just SOME days because that is who he is. We knew better. He was hurting and we were OVERJOYED that it wasn’t some spinal column tumor or worse but we were frustrated because we didn’t know what it was and fearful of what we didn’t know was coming. Showing itself day after day, week after week was the pain and we couldn’t figure it out. Shamefully, I started to wonder if it was psychosomatic or something. It wasn’t. It isn’t. I should know this. I couldn’t walk 10 feet in his shoes.
2 weeks ago, the Childrens Tumor Foundation had their annual gala in NYC and was celebrating 40 years. Beth and Jack went to the event and to spend some time in the city. They walked around a bit, took in some sights, grabbed some great food and spent some quality time together. They had a great day. The next morning he could barely walk. He was in pain that Beth had never seen in him before. She was really upset. He was really upset and we really needed some answers.
Finally, it was time to return to the orthopaedic doctor and see what is going on. We were desperate to provide relief to Jack. Beth was spending hours and weeks to find anything she could. Did I tell you she is “wicked smaht”? Then she found something that described his symptoms but we weren’t sure. She mentioned that we would go see the doctor and get a new X-Ray on his feet and see if it is something called Tarsal Coalition. Of course, I looked it up and it seemed that the symptoms were similar. We went to the doctor and after Jack described his pain and symptoms we went upstairs for the X-ray and in about 20 minutes returned to the doctor.
He came into the office somewhat stoically and said, “Good news, bad news. Bad news is that Jack has Tarsal Coalition.” I looked at Beth and our jaws dropped. “We thought that’s what it was”, Beth said. All this happens in a split moment and his look at us was briefly, an “I’m calling BS” look. Then he saw Beth immediately reach into her purse for the printed out pages (all marked up as a lawyer would) describing Tarsal. We were so relieved to have an answer even it meant that there was something coming at us in about 10 seconds. Jack was listening intently as he always does. I just looked at his feet, interrupted by the doctor’s next comments.
He said the “Good news is that we can FIX this!” This is a phrase that people with NF and the complications that come with it do not hear very much. I could see the tension slowly leave Beth’s body. Jack was still listening. The doctor went to get a model of the human foot and went onto explain what Beth already knew and more importantly how he will fix it. “Jack will endure another 2 surgeries, one on each foot”. My ears were on the doctor; my eyes were on my boy. I don’t know how he does it. He listened, we caught eyes for a second and I was challenged once again to not lose it. The doctor went onto explain that this surgery will take about 3 months recovery for each foot and casts, and hospital and scooters, etc. I was listening to the man describe the “fix” and was overwhelmed that there is a solution but so sad for Jack and what lay ahead. As his Uncle Danny has said many times, toughest kid I know who needs to catch a friggin’ break.
As always, Jack had questions. Important questions. Relevant questions. The doctor answered each one and was honest. He told Jack that this will involve a little bit of pain that can overwhelm some people and then he paused and said, “Not you, though. It’s going to hurt but relative to what I KNOW you have been through, you will be fine. Mom and Dad, I mean that”! Then he fist pumped Jack and we began to discuss other details.
I looked at his shoes covering those feet and I realized again that I couldn’t walk in them for TEN FEET. I thought about the journey those feet have been on in just 13 years. I couldn’t do a day in his shoes. I think of the countless walks to doctor appointments, MRI’s, X-RAYS, PT appointments and know I can’t walk in his shoes. I think of the number of rooms those feet and those shoes walk into and are met with curiosity or just plain staring and how those shoes and those feet carry him right past it all. I think of those shoes as he walks around the golf events, genuinely thanking participants, volunteers, and sponsors alike. I think of the pain in those shoes and wonder how sometimes one foot goes in front of the other. I think of those shoes and how that maybe they wished they could run fast or climb high, but cannot. I think of what he must have endured this summer at Camp Courage just to be one of the Boy Scouts like his friends. Jack’s Journey, as we have called it, begins every day with those feet and those shoes and even if I was man enough to take on his burden, I cannot. It reminds me once again that it is uniquely his and all I can do is walk beside him or carry him when he asks.
It’s crazy isn’t it? As parents of a child with NF, you leave the doctors office and he tells you your son is having surgery again and you have a sense of relief? Of course the relief is well founded but I HATE that this is what he must battle. Many times people have said over the years, “How do you do it, Jake? How do you guys do it?” Well, what I don’t say is the truth of the matter. He does it. He leads us all with his valor and bravery. While relatively speaking, this surgery is not as major as his brain surgery, the recovery and therapy is long and intense. He will be challenged in different ways but in the end he will be better and will get through this too.
Surgery is scheduled for Monday, November 12th in that we do not want to disturb his summer. Of course we will keep you up to date as always. I can’t walk in his shoes but I may be his shoes for a while and that is OK by me. Thanks as always for the support.
Tomorrow there is HOPE and you are among the reasons why. Don’t ever forget that fact. EVER.
Jake, Beth, Jack, Luke and Grace
