Liz Morris

@liz-morris-5 | contributor
I am the mom to an amazing toddler son with mitochondrial disease. We hail from the beautiful Pacific Northwest.
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I read The Gene as soon as it was published, desperate to understand how a single, random mutation could so cruelly limit my son’s life. Seeing the story of Susannah and her parents, Dr., and this community featured in the PBS documentary adaptation has been so powerful. We see our family in yours. Thank you for sharing your story.

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Liz Morris

Accepting My Child's Life-Limiting Illness Is an Act of Love

November 9, 2016. Disoriented doesn’t even begin to describe it. You’re on another planet. The terrestrial norms that have kept you grounded for 32 years are meaningless, annihilated by forces beyond your control. Your characteristic practicality and diligence are no match for the septic, strange world in which you now find yourself — a world in which children are born with life-limiting illnesses, and their new parents must cope with grit they don’t yet know they have. A world in which your 5 -pound son, who was due today but arrived almost three weeks early, sits swallowed in a Seattle Children’s Hospital bed with clanging metal sides that remind you of a prison. Impossible numbers of doctors, nurses, residents, interns, medical assistants, fellows, social workers and other strangers have spent the past five days puzzling over why the lactate levels on his newborn blood screening were so staggeringly high. You didn’t know then what you know now — that lactate is a biochemical byproduct, not the same as lactose from milk. You (ridiculously, hopefully, repeatedly) ask the nutritionist if maybe your son just has an allergy to your breast milk? And maybe we’ll just make some modifications to his diet and this will all go away? Of course, they probably don’t do emergency room spinal taps to test for food allergies, or twice daily blood draws for days on end, leeching from your son’s scalp once they’ve exhausted all other veins. Food allergies probably don’t show up on heart and brain ultrasounds. Or resolve through aggressive rounds of intravenous medications to supplement critical chemical deficiencies. But you don’t know this. You do know you are still bleeding from giving birth. You know you haven’t slept for more than three hours at a time since he’s been born. You know if you weren’t so tired and heartbroken, you might have screamed at the lactation consultant who suggested you go hand express your milk in the shower. The one who, when you told her you were too sad to shower, unhelpfully said, “…but the tears help the milk flow.” You don’t want your tears to make your milk flow. You want to be back home, in your son’s gray and white nursery, feeding him at his insistence and marveling at his tiny tundra of copper colored hair. You want someone, anyone, to tell you that you will survive whatever this is. You’re too terrified to ask if he will. October 21, 2017. You have your (non)answer. Your son turns 1 today, delightful in his green dinosaur shirt, surrounded by adoring family. They, like you, understand the uniqueness of this boy’s tender and resilient spirit. You know, given the opacity of his prognosis, that thismay be the only birthday he gets. Or the first of just a few. Or maybe, just maybe, one of many. Mitochondrial disease often kills children. And it sometimes doesn’t. Your son’s list of secondary symptoms from this genetic metabolic disorder has spiraled over the year. When he was 6 months old, you learned how to do daily injections to treat his seizures. The thin, shiny needle felt like a butcher knife in your shaking hands. When he was 8 months old, you learned the cells in his stormy blue eyes had atrophied, and that he was functionally blind. Your son cannot see your face. At almost 9 months old, he received a feeding tube to supplement his nutrition, since his body cannot sustain energy for eating. Global physical and intellectual delays put him at the developmental level of a 4-month-old. He cannot hold his own head up, let alone crawl, walk or run into your arms. Your son may never call you mama. The lists of milestones the state sends you every three months feels like a cruel bureaucratic joke. Your son is, after all, registered with the state’s division of developmental disabilities. Why can’t your tax dollars pay for someone to ensure these never find their way into the hands of grieving parents? Of course, it’s not all upsetting mail and doctor visits. There are trips to large family reunions in Utah, Oregon and California where your son is welcomed, celebrated and prayed over in a way that makes you believe in eternal families again. There are walks through Japanese gardens, where you describe every shade and shape of azalea and rhododendron you encounter. You put his feet in the chilly Pacific Ocean. You pick clematis and hold it to his nose during walks through your bustling Ballard neighborhood. You read him, “A Children’s Garden of Verses,” by Robert Louis Stevenson and plead with God and Gaia that his hearing remains intact, sohe can at least find comfort in your voice. You are simultaneously gutted and elated by every reality of his existence. Cortisol and adrenaline have been your fuel for a year, and as a result, your wanting tends to wander. Some days, all you need to feel whole is your son in your arms, a cup of instant coffee and a double chocolate donut from the shop on the corner. Other days, your fear of the future is so debilitating you simply want to fall asleep, floating in a sensory deprivation tank, for hours, days, weeks. Sleep for you remains as sporadic as it was when he was a newborn, given a round-the-clock medication schedule. So, you do what all striving parents must do: calibrate, then recalibrate, what it will take to maintain your mental health. Amid this universal balancing act, you begin to find your footing. You feel almost “normal” — like you might just be able to make your son’s time on this earth wonderful. May 13, 2018. Mother’s Day. Moving day. Against all odds, you have successfully purchased a new home in one of the most competitive real estate markets in the country. A home that has already been adapted for wheelchair accessibility. A home with a westward facing backyard where you and your son sit to feel the sunset and say goodnight to the nesting birds in the trees along the fence line. A home where you can faintly hear the horn of the ferry and the blast of the train along the port of the Puget Sound. You feel immensely fortunate to have landed in a place where he can grow along his own trajectory. Over the past several months, you have read everything you can find on inborn errors of metabolism, parenting children with disabilities, human evolution and genetic variation. You learn the latter is essential. Valuable. Inevitable. Your son is essential. Valuable. Inevitable. You find comfort in the words of the poet W.S. Merwin, “…from what we cannot hold, the stars are made.” You will hold your son as long and as lovingly as you can. If you must, you will let him go. You yearn to do it well.

Liz Morris

Experiencing Fear When Parenting Your Child With a Rare Disease

Parenting a child with a rare disease is an exercise in constant calibration. All of your energy goes to maintaining an almost-impossible equilibrium: keeping your child as comfortable or medically stable as possible, while making as much progress as they can, while finding some semblance of normalcy in your day-to-day. Mundane things feel like huge accomplishments, like trips to the grocery store or cleaning the kitchen. And they are huge accomplishments, because you, parent to a kid with a rare disease, are essentially balancing on one foot, all of the time. On top of the Eiffel Tower. While it’s perched at the summit of Mt. Everest. Which is why the slightest breath of change makes you feel like you’re in a terrifying free fall from the summit of the “normal” that you’ve worked so hard to create. This is true of both positive and negative changes. Feeding my son has been a wonderful bonding experience for us, and it has been a constant challenge since his birth a year and a half ago. Due to complications from mitochondrial disease, he had an NG tube placed at nine months old, and a G-tube placed at 14 months. These tubes were great tools to provide supplemental formula, after feeding him a couple of ounces on the bottle. It felt so fulfilling to hold him, feed him, and meet his needs in such a tangible way. Then one day, at about 16 months old, he just stopped taking the bottle. I tried for two weeks to get him back on the bottle, and he consistently refused. When I realized I wasn’t ever going to be able to feed him a bottle again, I cried as hard as I did on the day he was diagnosed. Part of my sorrow was due to the realization that my baby is moving away from his babyhood, and becoming more of an independent-minded little dude. All parents feel this sense of loss over babyhood, regardless of their child’s health status. But the biggest part of my sorrow was rooted in fear: fear that he is regressing. That the neurological complications caused by his disease are getting worse. Fear that he no longer experiences actual hunger or no longer has the skills to tell me when he wants to eat. Fear that he’s still not interested in solids, and fear that he’s losing his ability to coordinate a suck or swallow. All tied, of course, to the big, monstrous, horrific fear I live with every day: that this disease will take him from me. Cue the sobbing. That big, monstrous, horrific fear pervades even the wonderful changes. We recently bought a new home that is perfect for our son to grow into. It is a single-level rambler, with an open floor plan and a wheelchair ramp. This space is ideal, as my son has extremely limited mobility and is blind, so will require assistive technology throughout his life. My husband and I are elated to have found such a fitting home, as we currently live in a town home with two flights of stairs, and it’s becoming physically taxing to carry our son up and down everywhere. And yet the shadow of fear follows me as we make this positive move. While we think about where our furniture will go in our new house, I’ve also thought “we could get a hospital bed in his bedroom if we ever need to.” I really don’t want to have these thoughts while we move into a new house, with every intent to grow and thrive in it as a family — but there they are. Transitions are difficult when your child has a rare disease because the stakes are often life and death, or some unforeseeable place in between. No parent in our circumstances, no matter how mindful they are or how hard they work to live in the present moment, can ever forget the stakes. And that is brutal. So, we face our fears head on. We give our fear enough room to breathe without sucking all the joy out of our lives, while maintaining the rigorous balancing act of caringfor our medically complex kids. Loving them is easy. It’s everything else that’s hard.

Nikki Stusick

What It's Like to Bring a Child Home From the NICU

A year ago today, we headed home after being in the hospital for six days after our son, Theo was born. The nurse walked us to the door and then we had to wait for my husband, Turner. I remember another couple coming out with their new baby, and I asked her birthday and they said two days ago — code for “we weren’t in the NICU.” They seemed tired and honestly, not that happy. I remember looking over at Theo and thinking we know perspective in a way most parents don’t learn in the first days, or maybe ever. We experienced what might be the hardest start to parenthood and Earth-hood (for Theo) that’s possible. I felt the full throttle of emotions, but I remember trying to soak in the feeling of relief and pride. That was my first lesson in mothering Theo, as much as my mind traveled when I looked at this other family and what they “had.” When I did that, I lost the feeling, a feeling we had earned and had hoped for. I let it slip away by not fully seeing my baby and my story. Waiting in that lobby and the first drive home both evoke similar emotions to much of my experience this year as a parent. When I think Theo isn’t listening, doesn’t know me, or doesn’t understand, he gives me some sign that he absolutely does. He shows me time and time again at his own pace, in his own way, and with his own manual that he is right there. But if we worry too much about what he isn’t, how our path stands up against others, or look at it all from the wrong angle, we won’t find him. We won’t see Theo. I go back to that moment and treasure it, even with its heartache and even in the times it feels like a fight to find the peace with it. I feel the wind coming in with the windows down riding alongside Theo in the backseat. As we neared home, I felt the heartache again — the worry, the confusion. Just like so many times this year, even in really beautiful moments. It’s fleeting, these feelings of gratitude, hope, and pride. They can be easily overshadowed by the magnitude of everything else. So, I’m remembering this day, this drive, this simple moment where for the first time, we were a family of three driving home and just being together. (Happy Birthday Theodore Lewis Stusick Binkley. Thank you for stretching our minds, filling our hearts, and for being a little human who takes marching to the beat of his own drum to the next level. We love you.) Follow this journey on Instagram at Theo’s Village

Liz Morris

How Palliative Care for Our Son Helps Us Balance Action and Acceptance

When my son was just over 1-month-old, my husband and I went on a date. It was a rainy November day in 2016, and we were determined to leave the house together to do something, anything, not related to baby duty. Of course, as a new mom whose infant son had just spent a harrowing week at the local children’s hospital and been diagnosed with mitochondrial disease, it was hard to tear myself away. But, in our visit to a local art studio, I found a piece of inspiration that informed my parenting journey profoundly and helped me embrace palliative care early in my son’s life. A beautiful drawing of a pair of hands, lifting up a heart with wings, and a quote: “May I always know hopeBalance action with acceptanceFind the grace in every momentShowing compassionAs I love without holding back”— Marti Mariette This simple poem, prayer, koan became my mission statement for living a purposeful and peaceful life with my son. For feeling, in some small way, that I could shape the gutting actuality of his disease into an exuberant existence. I’d like to say that when his neurologist first recommended that my husband and I meet with our hospital’s Pediatric Advanced Care Team (PACT), I immediately tapped into these guiding words and scheduled that meeting with a smile on my face. Of course, that’s not what happened, but this idea of balancing “action with acceptance” helped me get to that place much sooner than I may otherwise have. My son’s neurologist recommended we pursue conversations about palliative care when, at about 7 months old, my son’s seizures had not come under control of medication despite multiple attempts. I immediately bristled at the suggestion to meet with the PACT, and sharply asked “Aren’t those the people who help with things like advanced directives?” I was in raging denial that we might need to deal with something like that so soon in our son’s life. The doctor gently explained that yes, advanced directives are included in the PACT scope of work, but so were many other things related to helping our son live a comfortable life, and helping us as parents feel in control of our decisions related to his care. I cannot overstate how powerful it was to have a doctor explain her palliative care referral in a way that positioned it as an opportunity for influence, rather than a form of resignation. Since that time, my husband and I have met with the Pediatric Advanced Care Team twice. The first time, when our son was about 8 months old, it was a simple “get to know you” conversation. We were able to share more about our son’s incredible personality, his primary diagnosis, his constellation of symptoms, and our hopes, fears and values for our family. The PACT representativesexplained the many ways they could help us, such as accompanying us to clinic visits, facilitating complex decisions about our son’s care with us and his army of medical providers, serving as a sounding board for me and my husband, or making referrals to outside community agencies for respite or other support. I realized the important differentiating factor between them and our son’s doctors: our son’s doctors are (rightly) focused on the physical manifestations of his disease. The palliative care providers help us focus on all the other ways those manifestations impact our son and us — in our heads, in our hearts, in our home. Our second meeting was more recently, just this past December, as we prepared for our son’s G-tube surgery. My husband and I both felt strongly that placing a G-tube was the right thing to do, but we wanted to be on the same page about why we felt that way. So, we went to our meeting with the PACT armed with the following discussion topics (and influenced by the Courageous Parents Network Framework for Difficult Decisions): Why does this intervention feel appropriate at this time? Under what circumstances would we stop using this intervention? Assuming all things remain the same, what would happen if we stopped using his G-tube and his “failure to thrive” wentuntreated? What are other potential interventions or medical decisions that we might need to consider in the future? How do we feelabout them currently? As a result of this conversation, my husband and I came away with some insights into the value of palliative care that I hope may be useful for others considering incorporating it into their child’s life. 1. For us, palliative care is not a plan. It’s a philosophy. There are far too many medical and developmental variables related to our son’s condition for us to do any concrete scenario planning. But, by naming our priorities and our uncertainties with the PACT, we can co-create mutual understanding that ultimately serves our son. The PACT learns about our family’s values and priorities, while my husband and I learn about caretaking options we may not otherwise have been aware of. In our most recent discussion, we learned more about what comfort feeding is. We also learned about some medical circumstances where short term vs. long term invasive interventions may be relevant, and we were provided with a safe space to talk about our feelings related to that. 2. Perhaps most critically, palliative care providers help families hold an incredibly intricate space. When your child has a life-limiting illness, there are no easy conversations about their futures, and there are no right answers. Every situation is deeply unique. These are not issues we want to discuss with family and friends, largely because they are private, but also because we want loved ones to be able to engage with our son, not his disease. We have been fortunate that thus far in our son’s life, we have not had to make any quick decisions about his care, nor have we had to make decisions under extreme emotional duress. But the possibility is always there. Understanding that there are people on our team who know us, and him, and can reflect our priorities back to us in challenging or exhausting times is a huge source of comfort. I was a nervous wreck prior to our son’s G-tube surgery, but on the actual day, I found myself full of calm. In that beautiful space between action and acceptance. I knew we had thought through our decision as fully as possible. This allowed me to release lingering feelings of anxiety and self-recrimination, and be fully present for my son during his recent procedure and current recovery. This capacity for presence, aided by palliative care, is invaluable to me as a mom, who, 15 months into my son’s life, marvels at his beauty, strength and potential every single day. This post was originally published at the Courageous Parents Network. We want to hear your story. Become a Mighty contributor here . Getty image by brickrena

Liz Morris

How to Parent a Child With Mitochondrial Disease

Our family just returned from an incredible trip to the Grand Canyon. I have always wanted to visit this natural wonder, so I was thrilled when my in-laws offered us a free stay at their time-share property in Sedona. My husband and I marveled at the sunsets and moonrises among the red rocks, and explored the South Rim of the Grand Canyon in awe, all with our 13-month-old son in tow. We were glad for a chance to take a vacation together and add some variety to our routine, which is often highly dictated by the complexity of our son’s mitochondrial disease. But, as a well-meaning comment from a TSA agent reminded me, we can never truly get away from our son’s life-limiting illness. It happened as the agent finished screening some of the many medications our son takes to stabilize his irregular body chemistry. As the agent handed the meds back to me, he kindly said, “I hope your baby gets better.” My immediate response? “He won’t.” Of course, I didn’t say that out loud. I try not to project my grief onto others, particularly when those individuals are just being kind. But, in that moment, I had to face the heartbreaking reality, yet again, that my son’s disease cannot be cured, and that his multiple symptoms will not get better. My blind baby will not get his sight back. His seizures have failed to respond to any medication. His kidneys have begun to show signs of dysfunction. He is about to have a feeding tube surgically placed because his body simply cannot produce enough energy for him to consume a full meal independently. The list goes on, and will likely continue to grow over time. I have learned to live with the fear this knowledge brings, mostly by confronting it very deliberately, only examining the aspects of it that my heart can handle at any given point in time. But sometimes, like this time, it lands on me like a boulder. When the agent said, “I hope your baby gets better,” I smiled and said thank you, then quickly turned away to clench my jaw, hold my breath for a beat, and swallow down the volcanic sob fighting to burst out of me. Wiping away the few tears I allowed myself, I thought of a question my brother once asked me. “How was your son’s day today?” I ask myself this question often, and it has been a lifeline in moments like this. My brother asked me this during one particularly tough stretch of caretaking, as I told him about my own anxiety as a new mom to a medically fragile child. By gently asking about my son, my brother reminded me that my emotions, which are sometimes difficult to face, do not have to shape or reflect my son’s reality. In fact, my son has amazing days! We are fortunate that his disease does not cause him pain. He is incredibly sweet-natured, and receives so much love and positive attention. Although he is fragile, he is stable, and he’s actually had more adventures with us than some adults take in a lifetime. So, when I’m confronted with the reality of our situation and our world begins to spin, I simply ask myself, “How was his day today?” The answer is, almost always, great. Whether we’re at the Grand Canyon, snuggled in our living room, or even at our umpteenth doctor’s appointment, I am grateful for every terrific day, and all the others in between. We want to hear your story. Become a Mighty contributor here . Getty Images photo via Shinyfamily