Take a deep breath... hold 1, 2, 3...repeat
When your baby is born with a lifelong, progressive, genetic condition, you learn quickly, and often without realization, how to navigate the medical system. You become a strong advocate for your child and you find that you will stop at nothing to protect his interests. It becomes a part of your own identity, as it did for me. My son has neurofibromatosis, type 1 and I’m an NF Mom. Neither of those facts will ever change, however, once he became an “adult” in the eyes of the system, my role suddenly and swiftly, changed so completely. To clarify, my role shifted in respect to the system, but in my heart and in my brain, being his champion hasn’t changed one iota.
In our case, the changes were a bit delayed because his medical care was paused during the global pandemic. We had already made the decision to transition his care to the adult NF Clinic at Johns Hopkins in Baltimore, MD prior to the start of the pandemic. We loved his team at Children’s National Medical Center and he had great care there, but at some point, being in a room with cartoon characters on the walls and waiting areas filled with young children limited his ability to feel grown-up. They would have continued to see him there for many years, which we were grateful for. I’ve heard others’ horror stories about being cut off suddenly at the age of 18 and scrambling to find alternative care. We feel fortunate to be relatively close to an adult center of care and saw the opportunity to establish him as a patient there just as the world hit the pause button and maintenance care slowed to a halt. When things started to reopen, our emerging adult was navigating the final phase of his education with a hybrid model of online lectures and in-person labs. He was focused on his goal of graduating as a licensed Veterinary Technician and because of NF, that was enough at that moment. With NF-related learning challenges in addition to the adjustment to online learning and finding his way while living apart from his family during the everchanging pandemic landscape, his hands were full. Because it’s important with NF to have regular check-ins due to the progressive nature of the disorder, this meant that he would have some catching up to do after graduation.
Despite every obstacle thrown his way, he did in fact achieve graduation and just a few months later, he passed his licensing exam to become a certified LVT! And without a moment’s rest, he began the process of managing his own care, with so much to coordinate at an out-of-town facility. Without hesitation, he rose to the challenge and mostly independently started transferring records, scheduling appointments, setting up MyChart, and getting the ball rolling for his transition. Of course, he had questions, needed input based on my ability to transport him, and on occasion, put me on speakerphone with someone who was impeding the process. He was learning and I quickly realized he’d been learning all along, I just hadn’t seen it clearly. I started to recall times when he’d truly been his own advocate and understood that he’d picked a few things up along the way. Understandably, twenty-four years of care had prepared him for this day.
I remember a time when the pediatrician had noticed something night quite right, which resulted in a visit to the urologist. At the time, we lived in a city that did not have an NF Clinic and we had to see someone without much experience in the world of neurofibromatosis. The provider examined him and fumbled through the appointment, bringing in a few of his colleagues to provide their opinions while subjecting, a then pre-teen boy to some pretty humbling stuff with his mom sitting just on the other side of a curtain. When the examination was finished and I’d rejoined them, said provider proceeded to reach out to shake my son’s hand. Without taking a breath, the immediate response to this was, “Aren’t you going to wash your hands?” After he washed up and regained his composure, the doctor began to explain what the next steps should be and outlined a plan for exploratory surgery. At just 12 years old, my son listened respectfully and then asked, “Don’t you think we should do an ultrasound or something before we think about surgery?” Bravo, young man! You were indeed learning how to self-advocate all along and here were two powerful examples of that!
Within a short period of time, this incredible, resilient, remarkable young man had a visit with the clinic coordinator scheduled and afterward proceeded to schedule 4 MRIs, an ultrasound, and set up new patient appointments with a plastic surgeon, neurologist, geneticist, and a neuro-ophthalmologist. It wasn’t easy and there were a few that needed to be rescheduled. He had to learn about things like how many days apart you need to schedule scans with contrast and how many areas can be included in one scan, but he dove in and he got it all done. This was a huge step forward in his transition to adulthood and adult care and he surpassed my expectations.
After the consultation appointments, there was additional follow-up, which he also managed on his own. He scheduled surgery to remove several dermal tumors before they could get any larger and as a result had to coordinate a pre-op visit and a COVID-19 PCR test. In addition, he reviewed and consented to take part in a full-body MRI study for early detection of MPNST. And he’s since had to schedule and reschedule follow-up scans as well as the surgery date and PCR test date. Surgery day was the icing on the cake for this new world of transition.
We drove up to Baltimore a few days before so that the COVID testing could be done at a Johns Hopkins facility. The day before he was to report to the outpatient surgical center, he received a call from one of the staff to review the instructions and preparation. He put the phone on speaker and let the nurse know that his mom was also there. She asked a few questions, which he answered, and then she asked which part of his body would be operated on. He stumbled a little and I pitched in, to which the nurse said, “I’d prefer to hear directly from the patient when possible.” Well okay then. Touché and thank you for your insensitivity by putting this fragile, feeling-a-little-less-relevant mother of a 24-year-old on notice. In hindsight though, that was good preparation for what was to come on surgery day.
The reality was that because of COVID and surging cases everywhere, the surgery center waiting room was closed. They were not permitting adult patients to have anyone with them during procedures. This meant that I would have to drop my son off and drive away to wait it out...offsite...alone. I went directly to my social media for support:
"What a strange feeling after a lifetime of being his advocate/his champion and holding his hand through every appointment, every scan, every procedure, every surgery. Today is surgery day and this young man is practicing his independence, maybe a little more quickly than he would have in our pre-COVID world. He was so brave and flashed that famous smile of his to reassure ME just as he turned to go inside…alone. I blinked and the tables turned. I’m currently processing all of the feelings that go with this transition, and there are so many.”
And then I started writing this blog. Granted, I’m finishing it a few days afterward, but blogging is my way of processing and coping with the conflicting emotions of being less relevant in my role as his caretaker and being so incredibly proud of the man that my child has become. One of my very inspiring friends, someone who has been to Hell and back, responded to my social media post with, “I'm so sorry you have to experience this.......and even more sorry for Jesse. But he is so brave! So full of strength and life! You helped cultivate that. You have to feel pride and joy somewhere under the fear and darkness.” Which is exactly what I needed to hear at that moment. I had indeed prepared him for this day and in the process, I’d prepared myself too. My role may have changed, but I am prepared to champion him and his cause for all of eternity. This leg of the journey is a little uncomfortable because it’s unfamiliar territory, yet I have a feeling that the pride I feel in his ability to handle everything that comes his way is what is going to get me through this and everything else that follows.
