Time Travel in the MRI Suite: A Journal Entry
By Laura Will
Returning to the MRI suite today was like walking into a memory. Three years ago and just to my left, I was sitting on a hospital bed with a 9lb version of Alden in my arms. He was breastfeeding, eyelids heavy. The point of this feed was not sustenance, it was sedation. He was about to be swaddled and strapped into an MRI machine to look at his brain.
It was May 2020, and I had driven to the hospital two days prior because my anxiety had reached its limit. My son was getting a full in-patient workup because I just knew in my mommy's heart that something was wrong. The clues had been subtle; so subtle that his primary care physician had said all was well just a week prior. So a part of me was hopeful that we were going to be discharged with a clean bill of health for Alden and a diagnosis of severe maternal anxiety for me; that would have been the best-case scenario.
He finished breastfeeding, and the nurse helped me wrap him in a warm blanket. He squirmed for a moment and then settled in as they velcroed him into a little bassinet that would slide right into the MRI. I was directed to a seat in the corner - a seat that I will learn, 3 years later, is still there today. I wonder how many other mothers have sat there, as the monstrous tubular machine cranks out pictures of malformations. I wonder how much sorrow has been captured, right here. Trauma in 2D.
Today I have a 28lb version of Alden in my arms. Arms that often ache with the weight of what they carry. Arms that are no doubt stronger than the last time my son and I were here. I remember peering through the glass wall at the radiologist who was scrolling through the images of my 4-month-old son’s brain as they were produced. I can remember her face and the occasional look of concern that made it hard for me to breathe. I told myself not to read into it; and yet, I thought I might puke.
Two hours later, his neurologist would come to tell me - and my husband on speaker phone (due to the one-parent-only rules of COVID) - that our lives would never be the same. She used skillful and supportive language as she told us a story of disability - physical and mental, moderate to severe - that sounded at that time like a nightmare from which we would not wake.
Today Alden has an anesthesiology team because breastfeeding and swaddling are no longer an option. He kicks and wriggles against it, but I hold him as he is sedated. His consciousness recedes and the nurse helps me lay him down and let go. The doctor says, “Good job Mom,” as I turn to walk out of the MRI suite. I try to smile. “You don't know the half of it,” I think, as I glance at the ghost of myself sitting in the chair in the corner of this MRI suite three years ago. I can see my past self, arms crossed as if trying to hold my heart inside my chest as if I knew it was about to be shattered with the results of the first MRI.
Today I am escorted to a waiting room, where I sit with a stroller, empty but for two little unlaced sneakers and a miniature toy school bus. And that is where I sit now, typing and wondering what I can say to that version of me still inside the MRI suite 3 years ago. Perhaps I could comfort her with some cliché like, “What doesn’t kill you makes you stronger,” or perhaps offer advice like, “Remember what you love,” and, “It is an extraordinary journey — lead with gratitude.” But it all falls short. Here at the hospital today, the painful edges of acute grief that poke out of the past are not soothed by words.
And so I stop typing and I close my eyes. I imagine standing up and pushing open the door of that MRI suite of 3 years past. I walk inside and my past self stands, arms falling to her sides as the door swings shut behind me. I open my arms. We lock eyes briefly, then I hug my fear-riddled body, heart to heart, past and present. And together we know: we can trust our future self will be strong enough for whatever comes next.
"Keep your gaze on the wounded place, that is where the light enters." - Rumi
Are you thinking about journaling? Make a free account on our website and start journaling today!
About Rare Resiliency:
Rare Resiliency is a monthly column written and/or curated by Laura Will. This column explores the concepts and skills that play a protective role against chronic and acute stress. Each article challenges and encourages the reader to continue to develop that inner steadying strength as they face illness and uncertainty, sorrow and joy.
Latest From Know Rare
From prenatal uncertainty and postpartum anxiety to therapy, grief, and hope, a mother shares her experience raising a child with a rare disease, navigating the healthcare system, finding community, and learning to embrace a different—but deeply meaningful—path as a parent.
A Danon disease study, led by researcher Dr. Barry Greenberg and published in the New England Journal of Medicine, wins an award! The study focuses on gene therapy as a potential treatment option for Danon disease. The study showed early signs that gene therapy may help the hearts of people with Danon disease.
A poster, presented at the European Hematology Association meeting in June, described a study that looked at tiredness (fatigue) in adults with immune thrombocytopenia (ITP). Researchers wanted to see if fatigue was related to bleeding or other health test results.
Lucky Shanmugan was recently featured in Porter Ranch Living, his local magazine, for Father’s Day: in his interview, Lucky talks about Osteogenesis Imperfecta, a rare genetic or heritable disorder of the connective tissue, and the incredible journey towards his official diagnosis.
Here are 9 things Chris Anselmo wishes someone had told him after his rare disease diagnosis.
A family’s hardships and resilience in finding answers and getting a diagnosis for their child, after numerous tests, brain biopsies, and hospitalizations. And the relief but also grief in finally putting a name to the rare disease that affects their child: BCL11B-related disorder.
The Danon Foundation boldly empowers people living with Danon disease, providing trusted information, resources and support to help navigate life, from diagnosis to treatment.
For many families, caregiving for a child with a rare or medically complex condition is a full-time job. The problem is, it’s a job with no training, no time off, and no clear job description. If you’re looking for the light at the end of the tunnel, you don’t have to search alone. Check out some of Paige’s favorite resources.
For most of celiacs, despite months on a strict GF diet, energy stays low and blood work reveals nutrient deficiencies. The lesson? A "gluten-free" label isn't a health guarantee—just a guarantee you'll pay more.
If you’ve been told you have seronegative NMOSD, there’s nearly 50/50 chance you have a different antibody causing your symptoms –MOG antibody.
Therapy Near Me is a nationwide mental health service based in Australia, providing easy access to psychologists, counsellors, behaviour support practitioners and social workers.
At the annual Kidney Week of the American Society of Nephrologists (ASN), the world’s largest kidney healthcare professional organization, new advances in research were highlighted. Over $35 million has been invested in research with the ASN, and there are many treatments in development for IgA Nephropathy (IgAN), with researchers actively investigating more than 20 different drugs.
When I was diagnosed with celiac disease, I thought avoiding bread and pasta would be enough. I quickly learned that living truly gluten-free is far more complex, and I'm sharing my experience to help newly diagnosed individuals understand what lies ahead.
Retinopathy is an eye problem that many people with Danon disease have. It can cause dark spots in the outer part of the eye, blurry or worse vision, and unusual test results on an eye exam. Sometimes these eye changes show up before heart problems, so an eye check can help find the disease early.
A heartfelt story about a mother who found purpose and strength among the tragedy of losing a child diagnosed with an ultra rare genetic disorder.
Kaya Girl Legacy, Inc. is a Florida-based nonprofit founded in memory of Kaya Humbert, a beautiful baby girl born with Sphingosine Phosphate Lyase Insufficiency Syndrome (SPLIS), one of 46 known cases worldwide. The foundation is dedicated to empowering families with knowledge about their genetic health and advocating for early access to genetic testing and rare disease awareness.
A prose poem by Jim Kuhn, a rare warrior living with Sarcoidosis, a rare inflammatory disease.
Rare Mom Laura shares how her family’s prep for Halloween turned into a burst of familial love and creativity, as they all worked together in designing and building a costume for Alden, her medically complex son.
Instead of starting with a newly discovered drug compound, PCOR is a type of research that starts by turning to patients and caregivers and asking, What matters most to you? What questions do we want answered? What symptoms do we wish were better managed? What keeps us up at night?
Four years ago, Michael Grivas’ life suddenly changed when he learned that he had Brugada Syndrome, a genetic disorder in which the electrical activity of the heart is abnormal due to channelopathy. Learn more about his story.
Fatigue is a very common and often debilitating symptom of IgAN. It is linked to disease progression and reduced kidney function, but other factors like inflammation, anemia, and mental health also play a role. In a 2025 study, the majority of patients with IgAN reported fatigue, and patients with more severe proteinuria and lower kidney filtration rates (eGFR) experienced worse fatigue.
Why is it so hard to accept help? Humans often associate help with weakness and loss of independence and control. However, if we reframe our thoughts, accepting help can be viewed as a form of empowerment: showing vulnerability and trusting someone to help us requires great strength.
There is so much mental load with having a rare disease. Rare Human Lindsay shares there are things she does not care about anymore, as she manages rare disease symptoms, specialists, and clinical trials.
Rare Human Lindsay shares her "silver linings." It's not 'what doesn't kill you makes you stronger,' instead it's what doesn't kill you makes you braver. She shares that she has found deeper connections with others, improved her ability to ask for and accept help, and not been as afraid of the word "no."
Journalist and rare disease advocate Lindsay Guentzel breaks down why clinical trials are a lifeline for the rare disease community. With only 5% of known rare diseases having an FDA-approved therapy, trials often represent the only path toward treatment, progress, and hope.
Lindsay was diagnosed with dermatomyositis a couple of years ago. Since then, she has undergone more than 350 doctor appointments, 250+ hours of infusions, 10+ ER visits, while juggling insurance approvals, rides, and her pain and fatigue.
Rare Human Lindsay is in the midst of her first clinical trial for dermatomyositis, a rare inflammatory disease that primarily affects the skin and muscles. So far, she has learned so much about the process and is eager to share some of her insights with the rare disease community.
Laura is a mother, wife, friend, sister, and nurse. When part of her identity became the mother of a child with a life-limiting medical condition, poetry became a powerful outlet. Follow her journey at her website, www.adragonmomswords.com, or on her instagram Instagram @lauramonroewill #aldenanthonysmiles