2020 had turned life as we all before knew it upside down. Like many people in the U.K. I was hoping that the start of 2021 would bring with it a welcome return to normality, but the reintroduction of a second national lockdown on January 6th made that appear increasingly unlikely for us all. That specific day took on an even greater significance for my family as it was the day my eldest son Jem was admitted to our nearest children's hospital with what was later established to be RRMS. It was clear then that covid wasn't going to be the only thing turning our world upside down.
We had had a lovely Christmas despite the upset of not being able to properly see family and friends and Jem had been studying hard for his upcoming GCSE mock exams. He had mentioned over a couple of days that he felt a bit dizzy and generally more tired and we had noticed that he was a bit wobbly when we went for a walk that evening. He also said he was struggling to hold his pen properly in his writing hand but we put it down to him working hard. As a medical parent, my kids have suffered the fate of many children in the same situation and know they will get short shrift for minor symptoms but by the second day, I was starting to feel a bit uneasy that something more significant might be going on, despite his symptoms at that point being vague and mild. On the morning of the 6th, I was about to leave for work when Jem came downstairs for breakfast, and I heard a clatter. I looked over to see he had dropped his plate of food on the floor, his arm hanging limply at his side, his face drooping on the right, and when I asked him if he was ok it was evident his speech was slurred. My mind was racing- had he had a stroke? Did he have a brain tumour? None of the possibilities seemed good ones.
Two hours later when I watched him go into the tunnel in the CT scan room, I had a strong sense that life was about to be disrupted for him in a much deeper way than covid had already changed it. The whole of that day was taken up having a series of investigations culminating with him and I sitting in an A&E cubicle with one of the consultants, looking at a screen showing Jem's MRI scans and seeing with horror these huge white demyelinating lesions covering his whole brain. Too many of them to count easily. It was such a shocking image of damage that I couldn't reconcile it being my son's brain. He spent two weeks in hospital and covid meant no visitors were permitted so we were separated from my husband, younger son and other members of our family, holed up in a small, windowless room that was hotter than the sun and with only one pillow between us. I spent much of my time standing outside the door like a sentinel, preventing the constant interruptions that are such an inevitable part of being in the hospital, just so that Jem could sleep. He was exhausted. I'd never witnessed such overwhelming fatigue in someone who only a few days previously was full of life. His symptoms continued to progress and the weakness and lack of coordination worsened day by day, affecting his swallow and now both sides of his body which we found frightening, heightened by the sense of loneliness and separation from those who could support him and also, truthfully, me. He endured further tests and various treatments to try and halt the relapse involving infusions and drugs that made him feel worse, not better and I scrabbled to understand the nuances of the diagnostic criteria, hanging my hopes on this being something other than MS. After all, children didn't get MS did they?
When we went home, his weakened limbs meant he could no longer get himself around the house unaccompanied. He didn't have the energy to move much anyway, spending whole days on the sofa just sleeping that pointless sleep that doesn't do its job of refreshing and re-energising, instead merely robbing him of time he should have been doing things more befitting of a 15-year-old with a full life to be leading. My mind was constantly alive trying to make sense of it all. He was meant to be taking his GCSEs in 4 months' time. He had made plans for his future that pivoted on doing well in them but now he couldn't stay awake long enough to read so much as one page of a book nor hold a pen to take an exam. He had huge hopes and aspirations and his whole sense of who he is was centred on his aptitude for schoolwork, his love of playing hockey and the multitude of extracurricular activities that filled his time. He could no longer do any of these things and it wasn't clear if and when he would be able to resume them, or if he did, when they might be taken away again if another relapse took hold. Children with MS have a higher relapse rate than adults and a notably high rate of cognitive dysfunction, amplified by the disruption to their education. One option being considered was that Jem would need to leave the school year he was in and take his GCSEs at a later date, but with this, he saw himself being further separated from his friends and the life he had been happily living until that day in January changed it all. As a doctor I had had patients with MS but I realised shamefully how little I actually knew about the realities of living with it. Many MS symptoms are invisible to others and yet deliver a significant burden to the person experiencing them.
Jem had such tiny amounts of energy he had to choose carefully what to expend it on. Tasked as we now were with making complex decisions around treatment, and with a need to make them quickly to prevent further damage to his body and brain, I did what I always do when faced with dilemmas and uncertainty - I read every bit of literature I could find, aiming to condense what he needed to know into manageable amounts and also, I hoped, to provide us all with some reassurance that it was going to be ok. None of it gave me any of the peace I so wanted to find. The inability of the professionals involved to clarify his future scared me further or just left me empty, unsure how to respond. In my working life I am sat on the other side of the diagnostic table, and so this felt uncomfortable, alien. It wasn't happening to me as the patient but nor was I a detached professional caregiver. In fact, I wasn't sure what my role was, but I was sure that whatever it was I wasn't doing a very good job of it. I was a strange witness to events out of my control and I felt completely at sea, unable (as I saw it) to solve it all for him. Covid meant we weren't afforded the opportunity to see people face to face so the final diagnosis was delivered by video link one evening, some weeks after his original admission. When the connection ended, we sat in our kitchen left with a million unanswered questions or with answers that we hadn't wanted to hear. I lay awake shaking with fear and wondering what I had done wrong as a Mum. What had I missed? It turned out from tests that this hadn't actually been his first relapse, yet how had I not seen there were issues before? That was time wasted when he could have been on treatment. Why hadn't I nagged him more to take Vitamin D? Perhaps that would have prevented this whole nightmare.
Had I done something wrong when I was pregnant? Why him and not me? One aspect of being a parent I had hugely underestimated before I had children was how difficult it is to separate your own happiness from theirs. Someone once said to me 'you are only ever as happy as your least happy child', so connected and interdependent are we with our children's lives. When they are young you can to a degree control their experiences and seek to create a happy life for them. It is in the teenage years and early adulthood that the necessary separation begins, and you must accept your job as a parent is to give them the tools to create their own happiness and then step back and trust you have done enough, leaving them to find their own path. I had such a strong sense of guilt and fear that his life was now going to be immeasurably difficult and frustrating, compounded by us having helped him lay the foundations to his future contentment by creating a web of identity that was now being torn apart. I’m a naturally pessimistic person and yet I had wholeheartedly supported him in shaping his sense of self around the things he was good at, never imagining for one moment those things might not always be available to him. How could I have got that so wrong? Why hadn't I planned for this possibility? In amongst the multitude of worries and anxieties, the overriding concern that kept me awake at night was whether he could still find peace and happiness in this new life he was facing.In fact, the fifteen months that have followed his diagnosis have revealed to me that my initial fear was thankfully wrong.
What Jem has shown me is that in pursuing the ambitions that had then after diagnosis felt like a house of cards, he had not just been achieving the obvious goals, but had actually learnt resilience, mental and physical strength, adaptability and the capacity to seize opportunities even if they might seem adrift from his initial goals, attributes that have served him well. He has surpassed all our expectations and thrived despite it all. MS is a roller coaster, but he has shown us all that he is going to be able to withstand the ride. He has the ability to live purely in the moment that we often berate teenagers for that has subsequently been a life lesson for me which I have benefitted in trying to emulate. It hasn't been an easy year, establishing treatment in the time of covid has felt like a lonely, frustrating battle at times and he has had ups and downs, learning as we are that MS likes to surprise you when you least expect it. Transitioning from paediatric to adult services is another challenge, with a new team and new facilities to get to know. But it turns out I still have a place after all in helping him with this new life. My initial response to seek all the information I could has served us well and I think I've shown him that he will need to continue that approach for life, advocating for himself and always asking questions and insisting on what he needs. After all, there will never be anyone as invested in your own health care as yourself.........except maybe your Mum.
To any parents facing the diagnosis of MS in their child, I want you to know that you aren't alone. The community is much smaller than that of adults with MS and of course, it is different, given we aren't ourselves patients. But there are others out there who recognise the way you feel and the specific challenges it brings. I'd like to see the support we can offer each other and our children being more formalised. I had to hunt out other parents of children with MS but finding them has been so helpful. Perhaps talking about paediatric MS in forums such as this one can be a start to making the connections that could help us all.
My name is Anna and I am a Mum to two teenage boys. My eldest son Jem has RRMS which was diagnosed when he was 15 and I found it hard to connect with other parents of children with MS because there are so few of us and not really any U.K. based formal support groups specifically for the paediatric MS population. Luckily I was able to connect with a few other parents by chance and it has been so positive for us that I wanted to encourage other parents of children with MS to do the same.