When most people picture a typical day for a seven-year-old, it’s easy to imagine busy classrooms, playground laughter, after-school activities, lots of personality and endless motion. That image is so deeply ingrained in us as parents that it can quietly become a measuring stick, one we don’t even realize we are holding. We all know the saying “comparison is the thief of joy.” I can attest that it truly is. For me, as a mom providing total care to my ventilator-dependent and tube-fed son Jeremiah, the measuring stick doesn’t just fail; it hurts.
Our days aren’t measured the same
My son has the rare disease thymidine kinase 2 deficiency (TK2d). His rest is critical for him to be able to live and function, especially because he has the infantile onset form of the disease. I’ve had to learn — sometimes the hard way — that a “good day” for my son does not look like anyone else’s. To be honest, it doesn’t need to.
TK2d is a condition that demands energy in ways most people will never fully understand. Every breath, every movement, every small effort requires more from Jeremiah’s body than it would from another child. When a ventilator is part of your child’s life, it’s a constant reminder that even breathing is something that needs an additional level of support. Add in all of his other medical complexities, and the day naturally becomes structured around care.
As parents we tend to question if we are doing enough for our children. Once those thoughts start creeping in, we compare our lives to “normal” lives, when ours are rare. The ingrained “stick” simply doesn’t measure up for Jeremiah’s far-from-ordinary life, so I do myself and him a disservice by even holding it as a measure of our days. Of course, that measuring stick is still very visible, but over time I’ve learned not to let it rob us of moments of joy, or stop us from celebrating any and all progress no matter how small it may be.
Focusing on the moments that truly matter
I’ve often tried to justify why I allow Jeremiah to rest so much. I changed my perspective to share with others that rest is not the absence of living: for children with TK2d, rest is what makes living possible. Rest allows their bodies to recover from the invisible work they are constantly doing, more work than you and I do. It helps preserve strength, reduce fatigue, and prevent unnecessary setbacks. For us, rest also creates space for stability in a condition that can be so unpredictable. With our focus always being quality of life, rest gives Jeremiah the energy to engage in the moments that truly matter, whether that’s a smile, a conversation using his eye gaze device, riding a special bike at therapy or wiggling to music around him.
We also have to redefine what engagement looks like. A typical seven-year-old might run outside for hours, but my son’s version of a full, meaningful day might include laying down and watching something he loves, sitting up for a few simple activities that involve play or spending time with his brothers. These moments are not “less than,” they are just different, and they are enough.
Letting go of comparison is one of the hardest parts of this journey. We have to reshape our own expectations and, sometimes, grieve the picture we once had in our minds. That grief is real, and it deserves space with grace; but alongside it, there can also be peace in recognizing that our children’s paths are uniquely their own.
As parents, we are often wired to push, advocate and maximize every opportunity. Through my seven years of fierce advocacy for Jeremiah, one of the most powerful things I do is protect my child’s energy. As I get older, I preserve my own too. There are days I cancel all of his therapy sessions, or decline events with guilt, because I know that rest is essential for his body. It’s a way to honor his internal needs, and the rest brings him a more steady flow of comfort over time. I even spaced out his therapy schedule, allowing a day in between where we stay home literally to rest. A day filled with rest, care and connection is not a lesser day; in the world of TK2d, it is a successful one.
To any parent walking this path: You are not failing your child by allowing them to rest, but rather meeting them exactly where they are and giving their body what it needs. Know that their worth is not measured by how closely they match the world around them, and a good day doesn’t have to be busy, it just has to be right for them.
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