This time of year I get pretty anxious. Not only is the Holiday Season upon us, but it's also the anniversary of Buster's strokes, his subsequent brain surgery, and his yearly post-surgical follow up brain scan. Normally, I'm rushing around trying to come up with our Thanksgiving menu, shop for the ingredients, brainstorm Christmas gifts, and all of the other craziness that comes with this time of year, except there is always a fog of...worry? Nerves? Sadness? Hope? I'm not sure what to call it because it changes just as quickly as I feel it. It can engulf me when I stop to think about it for even a moment.
After Buster's diagnosis and the ensuing chaos with trying to get him life-saving brain surgery, I didn't have much of a chance to reflect on the entire experience. Maybe I didn't want to. But every year I think about that stretch of madness and grief and try to find more meaning in it. I don't know why, because it isn't going to take it all away. I will never get back those moments of my life spent crumpled on my bedroom floor, mid-laundry load, as if the enormity of my reality was a physical pain. Or the minutes spent sitting on the edge of Buster's bed watching him sleep, silently sobbing so he wouldn't wake. Or driving alone in my car, hiding my pained face from other drivers as I thought about how much CJ and Birdie would miss Buster if he was no longer here with us. How would I tell them? Would they remember him? What would I say if someone asked me how many children I had? So many awful thoughts, shifting places in my mind like cards shuffled in a deck. One more always lay behind, and the pile never seemed to end.
Mr. Rogers told a story about seeing scary things on the news when he was a little boy. "My mother would tell me, 'Look for the helpers. You will always find people who are helping,'" he said. I often think about this when I reflect on that scary time for our family. There were so many miracles along the way, both in the years after Buster's strokes and during the six week sprint to save his life. I'm sharing them with you, hoping that you can find miracles, both big and small, on your own journey.
Miracle 1) Our move. A year and a half after Buster's strokes, we moved out of state. As I mentioned in my post Buster's Story, our neurologist where we lived previously told us that Buster's latest MRI looked so stable that he wouldn't need another MRI for two years, but because we were moving out of state she suggested we touch base with a local neurologist, just to get a relationship established. Of course, I connected with one right away. Six months after our move we met Buster's new neurologist who ordered his own brain scans to have on file. Those scans snowballed into genetic testing, a cerebral angiogram and finally, Buster's Moyamoya Disease diagnosis. I try not to think of it often, because it isn't what happened, but, what if we had never moved out of state? Buster would not have had another MRI for two years, in which time he could have easily slipped away from us. Once diagnosed with Moyamoya, Buster required surgery almost immediately. We would have waited another full year and a half even before his next scan, and he might not have made it that far. I can't imagine.
Miracle 2) I was a stay at home mom. This, at times, can feel like a burden, but in reality it is a miracle. I am grateful that we are financially stable enough to allow me to stay home with the three kiddos. B works so hard for us; I don't know how he does it all and still has the energy to come home and fly our children around the room and make them laugh at dinner and before bedtime. At that time of day, I am Done. Capital D. Spent. Frustrated. Wits end. Countless times, B and I will look back on Buster's diagnosis time and thank God that I was at home during the days. I spent hours on the phone, with our insurance company, battling over which procedures were considered "medically necessary" for Buster. I made appointments with multiple neurosurgeons for second, third, fourth opinions. I requested Buster's medical records from numerous hospitals, doctors, radiology practices. Side note: requesting medical records is not at all as easy as a "request." With multiple children's hospitals in our area, procedures are often split up based on each hospital's ability to perform the procedures, which means that medical records are not in one place but in multiple. And the hospitals or doctor's offices don't necessarily have reciprocal relationships and do not know who has what file/image/clinic notes. It is like spilling a puzzle with 1,000 pieces onto the dining room table, with no box cover image for reference. You couldn't pay me enough money to guess how many separate phone calls I made to each location while on the hunt for all of Buster's records. I called and emailed specialty healthcare hubs to ask about doctors' experience with Moyamoya in children. I collected images of Buster's brain and B scanned them onto CDs of our own because it was faster than waiting for the hospital to send the images to neurosurgeons. That time was an absolute blur and I don't know how I did it, especially with cranky, almost-two-year-old twins at home as well. My point is, it is a miracle I had the time to do all of the logistical heavy lifting required to get Buster the surgery he needed. Most people do not have the luxury of that time, and I get emotional thinking about a parent having to make the choice between going to work one day and working to save their child's life. It is unfathomable to me and my heart goes out to those who are in that position.
Miracle 3) A generous medical record keeper. Once I figured out the two US expert centers for Moyamoya Disease, Stanford and Boston Children's, I scrambled to obtain all of Buster's medical records. In order for either center to take Buster on as a patient, they had to review his records and brain imaging. Both centers offer second opinions for a diagnosis, so one day a week they review submitted records with their team before interacting with potential patients. From the time we received Buster's diagnosis from his local neurologist I felt as though I was racing against time; I could have waited until the following week to make sure Buster's records were all packaged but I wanted his case reviewed as soon as possible and I
knew I would move heaven and Earth if I had to. Medical records can take days to send out, and some hospitals told me it would be weeks before they could gather the information and mail to Boston and Stanford. I ended up calling most medical record offices rather than simply requesting the records online (tip for those in need of records: CALL before filling out the forms! I've found that most of the office staff is willing to offer advice and tips to submit properly and receive your records on time.). A young woman was my point of contact at the medical records office on one of the days I was frantically calling around, and she told me that FedEx picked up their records late in the afternoon and if I could get all of my ducks in a row and fill out the paperwork, I could catch that mailing. In my scramble to do so, the hours flew by and I was still waiting on other information in order to submit my request. The young woman helping me requested permission from her supervisor to over-night the records so I could make the review deadline! And on top of that, FedEx arrived early and she made the driver wait until I submitted all of my paperwork so that I wouldn't miss the final pick up that day. She was an angel, and worked so hard on my behalf. She didn't know me and she went above and beyond anyway. Because of her, Buster made the review deadline that week.
Miracle 4) A rule-breaking radiology nurse. Even though the medical record keeper managed to get Buster's records out in time, it turned out that the hospital from where I obtained the records did not have Buster's most recent scanned images. To this day, I have no idea how that is even possible. One minute they were there in their system, and the next minute they were gone. Seriously. I went into a tailspin of hopelessness trying to figure out what I could do. Boston Children's or Stanford would not take on Buster as a patient or even offer a second opinion unless they were able to view his scans. In a desperate attempt, I called the radiology practice of the Interventional Radiologist who performed Buster's cerebral angiogram. Since an angiogram is the only way to officially diagnose Moyamoya, I needed those images. I called the radiologist's office and was passed along to the radiologist's personal nurse. I told her there was a mix-up with the hospital, and I was frantic to send Buster's images to specialists in order to save his life, but they were lost. I begged her for help. She found the images on the radiologist's system and burned them onto CDs. She told me she would have them at their front desk with my name on them, and I could come pick them up. My husband drove 40 minutes to get them that afternoon, and wasn't allowed to mention to the office staff what he was picking up because the nurse could have been fired for releasing the images without an official signed document. If she didn't break the rules there may have been no way to recover Buster's images and he may not have had his surgery in time to save him. I was too afraid to send her a thank you note, for fear that she would be found out, but I think of her often and I am grateful for her willingness to take such a large risk for our family.
Miracle 5) A kind pediatrician's office worker. After all of the record requesting debacles, Buster was accepted by both Boston Children's and Stanford. We chose to have his surgery in Boston but he needed to have a pre-op physical within a certain time frame before he could travel for the procedure. I showed up at his pediatrician's office, as a walk-in, and asked for a pre-op physical. Everything had happened so quickly, and I don't know why it didn't occur to me at the time, but the nurse who greeted us informed me that I couldn't get a pre-op appointment without scheduling it ahead of time. I immediately broke down. There I was, with my mother, and Buster, and CJ and Birdie in a tandem stroller, screaming their heads off. They were only one and a half at the time and were incredibly fussy, as usual. I just...lost it. I felt I had broken through all the obstacles I thought I'd faced, just getting Buster his surgery scheduled. I was at the end of my race, and I couldn't even crawl to the finish line. All of the frustration, hope, anger, nerves and exhaustion sucker punched me. I tearfully explained to the nurse our situation. She watched me weep, and quietly said, "Let me see what I can do." She walked away for a moment and came back, and put us into an exam room. She explained that she was able to fit us in. We may have to wait, but she asked a nurse practitioner to perform the exam. Her compassion still makes me cry, and every time I am in the pediatrician's office, she asks about Buster.
One of the best pieces of advice my father has given me over the years is to ask for help, whether it is from a customer service representative, friend or, family member. It seems so simple but often times we jump into blaming, demanding and judging rather than treating others respectfully. He told me, "When you come from a place of asking for help, people are more willing to listen." While I made my frantic phone calls to secure Buster's surgery I found this to be absolutely true. When I spoke to people from a place of calm, and simply asked for help, I was given it. I may have wanted to scream in frustration at some of the people I spoke to, but I never did because I knew it wouldn't help my situation. There is something to be said for being "human." I may have been just another mother calling the doctor's office that day, or Buster another prospective patient, but those who helped me made me feel seen and heard. Is that miraculous? Maybe not. But it felt like it to me. I believe that God has a hand in all of our lives and that things happen they way they are supposed to. Some may look at the miracles I've detailed and claim they are nothing more than plans falling into place, or people "doing their job," and I guess I can see that. But believing they are tiny miracles keeps my hope brimming at the surface. And as we move into Buster's follow-up appointment season, hope itself can bring more miracles.
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