Dear Harbor Families,
When our daughter Emily had just turned three, we started noticing some unusual signs of hamstring tightness. It started when she couldn’t bend over to pick up her doll from the floor one morning, then I couldn’t reach her shoes to tie them while she was sitting on my lap (which I attributed to my pregnant self at first), and then it was just a little more difficult for her to climb stairs. As the signs added up, we quickly followed up with our doctor and the search for answers began. In the next five weeks, Emily became more and more weak, eventually losing the ability to climb stairs independently, sit up by herself, and even began to have trouble swallowing. It was terrifying, especially since for five weeks, we were not able to establish a diagnosis nor a clear path forward for treatment.
After several hospital stays, MRIs, an endoscopy, and a muscle biopsy, we were able to rule out muscular dystrophy, and after five weeks finally had a diagnosis (and in the meantime had a baby, by the way). It was a rare autoimmune disease called juvenile dermatomyositis, which causes muscle inflammation and, in many patients but not Emily, skin rashes. I remember receiving this news by phone with a two week old Jude in my arms; we rejoiced, since our worst fears were put to rest. Though life-threatening, the disease could be treated, and most kids responded well to treatment. After a brief celebration, the realization that the path forward was still very uncertain, and that she may go into remission or she may need medication all of her life, was sobering - but something we could manage.
I’ve been thinking about those five weeks recently, and the weeks that followed as we started the path to recovery for Emily, in relation to our collective experience with COVID. Stay with me here… Those months in lockdown, worrying for the health and safety of our family and most of all, our children, were grueling. That same heart-racing, anxious feeling returns, at least for me, in thinking about it. And then we started the slow path to recovery. But things are different, and won’t ever quite be the same as before.
With Emily’s JM diagnosis, the slow recovery meant more hospital stays, physical therapy, frequent trips to the rheumatologist, and high doses of prednisone and methotrexate. (Teaching a three year old to swallow gross-tasting pills is no joke - the secret we found was practicing with mini-M&Ms, then coating the real pills in fudge, in case that ever comes in handy for you). We had to be vigilant with sun exposure, since the sun can cause disease flare. Our daily routines were governed by appointments, medicines, and what Emily could handle as her body slowly began to respond to the treatment. Despite asking the doctor at every appointment how much time he thought we would need before dropping the doses, there was no timeline for that. Each decision about her medications had to be made based on her body’s response. The process of bringing the high doses of steroids down was extremely slow and very cautious, and had its bumps. Kind of like the infamous dimmer switches, sometimes we would see her muscle weakness or blood levels elevate slightly and have to bump her meds up a bit, which was tough but necessary news after all the progress of slowly decreasing them.
Upon reflection, it was kind of like those months when we all cautiously started coming out of our homes again, and when we returned to in-person school. Instead of teaching them to swallow pills, we taught our kids how to wear masks, keep distance, wash hands, and be careful of what they touch - all the while continuing to worry about what might happen if things took a turn for the worse. That phase was exhausting, wasn’t it? I know you all know from life experience beyond COVID that living day to day with worry and concern about the health of family members and friends - and our children - is absolutely exhausting.
In Emily’s story, months became a year - and then two. She could slowly do more physically, and our family routines became more typical. We kept her social and emotional development in the forefront, given the disruptive experience in her young childhood, and continued to wean her medications and physical therapy while monitoring her body’s response closely. Now, our 8 year old is happy, strong, and healthy, and though we will always need to watch for signs of disease flare and keep her protected from the sun, we are armed with the knowledge of the symptoms that will send us back to the rheumatologist and the ways to prevent a flare.
And here we are with COVID, monitoring for symptoms, adjusting the dimmer switches of our response, and keeping our children’s social/emotional experience in the forefront. While life is not what it used to be, we know a lot more about what we are dealing with and how to respond. Similar to when our family was searching for a diagnosis, the extreme fear and worry of the early days of COVID, when we didn’t have a path forward and each step was uncertain, has faded, but is not forgotten. And similar to the beginning of Emily’s treatment, we have made it through the difficult months responding to changing circumstances, with COVID still at center stage in life. And now, though life is not the same as it was before, we are learning to live with it.
Before I conclude, just a quick note to say thank you for taking the time to read such a long and personal account. I have to admit that although I knew I wanted to write it, I didn’t realize how emotional it would be to do so (I might have been wiping a few tears away while I typed!). I think this is a reminder as we transition to this new stage of the pandemic, we should really remember that we have all been through so much. And that our emotional experience, and that of our kids, is important to recognize and talk about. Thanks for letting me share mine.
Head of School