You may recall that I found out that D was diagnosed with cerebral palsy when he was 8 months old in an awful way – I just discovered it on paperwork following an appointment to his neurologist. It’s fitting that I just recently discovered he was no longer diagnosed with it in the same way, following his 2 year checkup. I confirmed with his pediatrician – she couldn’t remember if it was a conscious choice to remove the diagnosis from his long list, but she said he certainly doesn’t appear to have it.

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I feel conflicted about how to present this news – is it good? Or really, does it mean anything? When he was first diagnosed, my heart broke and I wished so hard that he wouldn’t have it. But now, I understand more that the list of diagnoses is not a reflection of who he is. Maybe because I’ve had 2 years to get to know the little stinker, but I’m not relying on doctor’s assessments to tell me how to feel. Mr T doesn’t have any of these kinds of reservations – he’s just happy! To be honest, I’m not positive he ever accepted the diagnosis in the first place, so this is a big “I told you so” moment for him!

This really must mean that he never had CP to begin with. CP is a “permanent movement disorder” and is not curable. Mr T is celebrating as though we’ve overcome something – although it’s clear that D didn’t get over CP, it must mean that he (with our help) overcame the delays his doctors were wrongly associating with CP.

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My confused reaction is complicated – the CP diagnosis was so helpful to my growth as a special needs parent. D’s journey has been so atypical, it was kind of nice to have an opening to a much larger community. In the beginning I felt more connected with the struggles of other parents, as D went to weekly PT and I had a lot of discussions about his tone. As time wore on I did begin to feel like more of an imposter, talking to moms whose kids may never be mobile at all, or who will always rely on braces or other devices. Until recently I was justifying his diagnosis by saying that his CP primarily affected his oral muscles, hence the much delayed swallowing and eating and chewing and all. But now, I wonder if the tone issues were more related to his long hospital stays, where he didn’t always get the correct motor stimulation (either due to us not being there 24-7, or the needed recovery time from surgeries). I’m grateful that we seem to have overcome these issues, and hope that they are just a distant memory for D.

If you have a loved one with CP, is this news upsetting or offensive to you? I fear that people who I shared D’s CP diagnosis with (like you all!) may think it was all a ploy for sympathy or inclusion or something, when in reality I’m just sharing the ups and downs of life, just as they present themselves.

Has the official version of your LO’s condition changed? Did you struggle with whiplash or accept the change wholeheartedly?