Coping

So I'm still trying to make sense of where we're at. I don't treat my kids any different post-diagnosis than I did pre-diagnosis. Yet, it feels as if something has shifted in my understanding of my life, my children, and our future.

I have more patience with their meltdowns because I know it stems from their inability to process it all. There's more understanding when things get crazy and I have one toddler banging her head, another throwing herself backwards and bumping her head before I can catch her, and a third one just flailing and crying. It doesn't help that they pick up on one another's cues which obviously makes every meltdown an epic fail in our household.

It's challenging for me to ascertain when they're just overtired like typical kids, or melting down like typical kids, versus something more going on. Post-diagnosis, they don't get away with more, but they do get more empathy while we're in the thick of it.

I also feel curiously validated. I wasn't just imagining some of their struggles. My concerns have certainly been dismissed by our pediatrician, our friends and family. In fact, our pediatrician didn't think it was necessary to send Ada for an eval with a neurologist, but because our PT insisted, I persuaded our pediatrician to give us the referral "just to rule things out."

After we received the first diagnosis, our ped didn't call or follow up. After the 2nd and 3rd diagnosis, again, nothing. Needless to say, I have changed pediatricians.

What was just a vague but persistent idea of slight atypicalness now has a name. There were things that I noticed, and wondered about, that I now know are related to paraparesis and hemiparesis.

The head lag they had as babies. The lack of protective reflex when they fall backward. The side preferences that Julia and Emma display. Little feet turning inward when walking. Standing on tiptoes. Ada's little legs caving in under her like jelly. She doesn't lose her balance like a tree being felled, she just kind of implodes like a building being detonated. It breaks my heart for a nanosecond, until I see her pushing herself back up and marching on. Determined.

My kids get tired easily. They sleep more during the day than other kids their age, always have. It's certainly a preemie thing, but it's also a Cerebral Palsy thing. Sometimes they flail more. They bang their heads when they're frustrated. They wipe out more than other kids learning to walk.

All of this adds a little more stress, and a little more self-doubt. I am already outnumbered, but there's nothing that makes you feel like an awful parent more than your kid getting hurt. My inability to protect them from themselves is what I struggle with most.

I am usually a step ahead when it looks like they're headed towards trouble. You know, walking towards a toy that they can trip over, or headed towards a ride-on toy that can slide away from them as they try to climb on, or sticking out a hand to pull hair/poke their sister in the eye/grab their sister's nose. That kind of thing. However, the suddenness of some of their frustrations and exhaustions escalating to a head-bang on a wooden floor, or a fall backwards on a hardwoord floor... that's the stuff that scares me. Because I often can't predict it, or hold all 3 simultaneously.

It's also weird in a sense, because they are so mildly affected that most people wouldn't even know they have this diagnosis. That's both good and bad. Good, because they most likely won't be treated any differently, and will be able to live independent lives. Bad, because they may need a little help and may not get it, because people won't realize they might be physically incapable of doing something other kids take for granted.

They may struggle with scissors and writing when they're older, or have trouble playing the piano. They may trip and fall more often than other kids. Their fine motor skills may be delayed. Or not. We just don't know.

All in all, I'm finding my way back to optimism, with sprinklings of gratitude and a dash of "I can handle this" mixed in with the worst-case uncertainty. I'm still working on letting go of the guilt. Check back in about 20 years on that one.