Theme: No Diagnosis
The mom of a boy – now 6 – born very prematurely talks with pride about how he has far surpassed early predictions. “He will show us what he is capable of.”
Theme: No Diagnosis
First published on ehospice.
Hi, I’m Soraya, and I’m 13 years old. I’m a kind and trendy girlie who loves a lot of things! Some of my favorite interests are playing games on my computer and iPad, playing with dolls (especially with my babysitters), my nails, reading graphic novels, and shopping for make-up. I also really love spending time with my friends and family—we like watching shows together and listening to music. That’s when I feel happiest and most like myself.
What makes me “me” is the way I connect with people. I feel people’s emotions deeply, and I always try to be kind and thoughtful. Even though I have a lot of interests and fun things I like to do, lately my body has been getting too tired to do everything I used to. But I still try to enjoy every moment and focus on what really matters—being with the people I love.
I have a medical condition that I’ve had since I was born. The doctors don’t know the exact name of my disease, which can be frustrating. It started with trouble eating when I was a baby, so I got a G-tube to help me eat. When I was younger, I could walk and run, but a couple of years ago my body started getting weaker and more tired. I began needing a BiPAP machine to help me breathe, and a wheelchair to get around. Now, my muscles are getting tighter and weaker, and I’ve been feeling a lot more pain throughout my body. I have a lot of medical symptoms, and while I know I’m dying sooner, I don’t know exactly when.
I’ve been working with a pediatric palliative care doctor for about three years now. Their job is to help me feel as comfortable as possible and support me and my family through everything. One of the biggest ways they’ve helped me is with pain management. Because of them, I’m still able to do some of the things I love without being overwhelmed by pain. They also help my parents come up with ideas to help me conserve energy.
One really helpful thing they did was talk to my teachers when I wasn’t being understood at school. My doctor explained that I’m dying sooner, and it helped my teachers understand my situation better. That made a big difference.
The palliative care team has also brought so many people into my life who support me and my family in different ways. There’s a massage therapist who helps me feel better physically and mentally. One of the very first things they did was help us apply for Make-A-Wish. I got to surf in Hawaii, which was incredible, and we made the most special memories together as a family. They even let my sisters come to appointments and ask questions—they know my sisters worry about me too. The music therapist plays calming music that I love, and the child life specialist does fun activities with me and my sisters. There’s also a chaplain and social worker who really support my parents. And I have a few favorite nurses who check on me regularly.
One time that palliative care was especially helpful was when my doctor came to visit me at home. I have so many doctor’s appointments that they really wear me out. Having my palliative care doctor come to my house was so comforting. They got to see my family and meet my pets, and it made things feel more personal and less stressful. Even though we had to talk about hard stuff, it was so nice to have that visit at home. I really wish more of my doctors could do visits like that.
Palliative care also helps me feel like myself and helps me do the things that are most important to me. They let me make decisions about my own care, which makes me feel in control. For example, recently I was getting too tired to take showers every day, but I felt bad about it. My parents weren’t sure what to do, but the team helped us decide that sponge baths are totally fine. That made a big difference in how I felt—more relaxed and understood.
Also, chewing and swallowing has been getting harder for me. Normally, I would have to do a swallow study, but I really hate the contrast taste and those tests are hard for me. The palliative care team supported my decision not to take the test. Now, I just eat what I want, when I want, and enjoy food without worrying.
Palliative care helps me be myself, stay comfortable, and spend my energy on the things I love most. They make it possible for me to keep living my life in the most meaningful way I can.
Theme: No Diagnosis
There are moments, days, weeks where I am certain that I will be overcome by the crippling uncertainty of it all. I suppose that giving birth to a baby boy–whom we all anticipated to be healthy and nothing less than typical–with a genetic syndrome will do that to a person.
When the protein causing the syndrome is isolated, the knowledge of the end brings an undeniable clarity. But the uncertainty and unknowns only increase when the de novo mutation has been identified in less than 100 children worldwide and there are more questions than answers, no timeline to guide our way (side note: there may be no other space, outside of the hospital, in which I could get away without defining de novo; this path we walk is on foreign land).
Our baby is living with a neurodegenerative condition, but we are all experiencing this condition –learning words and ways that we never knew existed. We all live with an ever-changing and declining definition of ‘good days,’ anticipating that the number of rotations we will share around the sun to be countable on one hand.
As these thoughts and their associated, uncountable emotions flood my mind, my heart rushes in my chest and my soul rages within, and I begin to question that which is impossible from solid ground: am I drowning?
Camden was born in July 2020. My midsummer boy who just missed June. While he was still a belly baby, the pandemic roared into our lives and my husband, Kyle, baby, and I, spent the last trimester of pregnancy in our 650 square foot home, isolated, together. Presently, Kyle is a fully remote worker and our family still spends each of our days with nothing more than a door separating us; we are all working, still somewhat isolated from the world, but infinitely together.
The work Camden and I do each day includes so much: hours of snuggles; singing melodic tunes and reading the tongue-twisters of childhood; opening our home to hospice providers, therapists, social workers; engaging in slow and gentle sensory play; attending to loads of needs and tubes that I will not detail; and walking a now well-worn path through the neighborhood when the weather allows.
Our days are also missing plenty: toddler babbles, giggles, smiles; the pitter-patter of small feet on hardwood or the bang-slide rhythm of crawling; tantrums and the resulting need for timeouts or discipline; tasting new, or any, foods together; experiencing the freedom, the luxury, that exists when you don’t have to wonder which day will be their last. At first it felt forced, but now I am fully assimilated into a form of parenting, caregiving, that I did not anticipate or learn from books, articles, or podcasts I sought out during pregnancy.
Being Camden’s mama different skills than that of mamas raising typical children. I have adopted a unique set of eyes that gives me a precious and heartbreaking perspective of the world. I have developed thicker armor and an intensity that leaves nothing unsaid. I am more fragile, more isolated, more mournful.
Yet, if you pay close attention here, our days are full of uncontainable celebration. I will not have to chase after my child. I am excused from disciplining his tender soul. I simply cannot compare him to other children or anticipate anything except exactly what he gives me moment to moment. Camden is the easiest, most complex baby that I may ever parent, and he has allowed me to learn a raw, pared down, child-focused form of parenting that I did not want, but have always needed.
I am watching Camden sleep, watching the rise and fall of his chest, and perhaps it is this that triggers the reminder in my body: take a deep breath, and let it go. Inhale the light, exhale the darkness. As I breathe alongside my boy and revel in the simplicity and weightiness of us breathing, here, together, I nearly scoff at the idea of drowning. Could I, instead, be floating?
My midsummer boy has taught me that there is a radical hope that can keep singing, despite the circumstances, the knowledge of the end, the test results. Hope that, as Emily Dickinson says, “sings the tune without the words and never stops at all.” This hope can arise from within, from faith or experience or desire. Hope can be gifted from outside ourselves, from nature or hospice nurses or friends we choose as family.
For me, hope allows me to let go of all that is mixed up in Camden’s genes or missing from our life together. The letting go allows me to cease my raging and fighting, to transition from drowning in the depths to floating in the healing waters of the salty, sun-drenched sea that is here and now with this boy.
Theme: No Diagnosis
Mom Natalie worked to connect with the teachers, therapists and doctors who would help show her “the sky’s the limit’ for Emma. “You are trying everything you can to help your kid be her best. You don’t know where this is going to end up.”
Theme: No Diagnosis
June MSW, LICSW, ACHP-SW, mother of Katie (28), who is medically complex and likely has Rett Syndrome, talks about the early years when everything felt so critical and intense, and then how one adapts and begins making plans for the rest of your life too.
Theme: No Diagnosis
Parents of 3 children under 9, the youngest of whom has a rare, terminal illness, talk about their different responses to the lack of a clear roadmap for their daughter.