Both my kids have an undiagnosed neurodegenerative disorder and will eventually die
I don’t know where else to share this, so this is my way of processing it. I hope it is okay to post this as it is anticipatory grief.
It all started with my first child not walking even at 18 months old. Pediatrician found they had hyperreflexia and clonus, and referred us to neurology. Child had to go through a myriad of tests including a sedated MRI, genetic testing that looked for cerebral palsy mimics, and eventually whole genome sequencing. Basically we were at the dead end of testing, and kiddo was now 2.5yo and still wasn’t making any progress with mobility.
We have always wanted two kids. We wanted to wait a little bit longer to make sure it wasn’t something genetic, or even if it was genetic we wanted to know what gene it was. When repeat genetic testing also came back clean and we didn’t see anything that stood out in kid’s MRI, we decided to proceed with having a second child.
My firstborn had a repeat MRI when I was 26 weeks pregnant with my second. Turns out my little one had lost some of the brain volume. This confirmed our worst doubts - it is something genetic and it is something that gets worse with time, and this is a ticking time b0mb. We were scared our second would have the same condition, but we couldn’t test because we didn’t even know what gene to look for.
We waited with anxiety. My second baby was born seemingly healthy with no complications at labor or as a newborn. But here we are with the baby almost 18mo, and not yet walking. We are reliving it all over again.
My older one is physically disabled, and goes for speech, OT, and PT. My little one is such a happy kid and wants so badly to play and use their body freely, but their body just doesn’t let them - for eg, they try to play legos and their little hands tremor. No matter how much therapy we put in, we cannot beat the disease and it eating away their brain a cell at a time. This is not a childhood anyone imagines or wants for their kids. We are grieving everything - their childhood, their abilities, and eventually we will be grieving them. We get to do this not just once but twice. Parents are supposed to watch their kids learn and grow, not slowly lose ability to move, to talk, to eat, to breathe.
This is a pain of a different kind, and one I don’t wish upon my worst enemies.