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.
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.
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?
blogger / kiwi / 675 posts
I am so happy he is doing so well what a cutie pie! I understand your conflicted feelings, I think I’d feel the same way. Maybe the diagnosis served to connect you to so many great families and learn a lot and that was its purpose in your life? I’m not really sure, life is funny in the way it brings us to certain people.
pomegranate / 3225 posts
Just hugs after reading this mom!
pomelo / 5628 posts
I sort of get why you are conflicted, but only sort of. First, you are not an imposter in any way shape or form! Your son has had a very complicated medical life and most diagnoses are not clear cut. Some people might be a little envious of this news, but not in a way that they aren’t happy for you guys! I’ve kind of had that happen for us. We had a traumatic first year, but now everything is basically ok. So we don’t fit in any “chronic” areas, but we also don’t feel quite normal/average.
Second, wow this is huge! It really is. Like you said CP is something you learn to live with, but it sounds like D’s issues are actually able to be overcome with therapy. That is amazing and you have the right to celebrate! You guys really have come so far and it’s amazing to watch. Hugs to everyone.
guest
I think one conflicting feeling i would have is that now it is like there is somehow some undue pressure on D to “overcome” his challenges (and I guess by extension for you). I’d also be pretty irked at the doctors. Changing the dx can have big impacts on insurance and services so they should have discussed. Either way I just love your blog posts- they never seemed to be about cp or medical issues as much as they were about parents who figure out a complex road for HER child. You have a great voice.
wonderful pomelo / 30692 posts
Huge hugs to you, mama! And so happy to hear that D is doing so well that his doctors no longer believe he has/had CP – I think that’s wonderful news!
blogger / persimmon / 1225 posts
Just want to say your response makes sense to me and that based on your writing tone you are a compassionate and caring person, not an impostor of any kind!
blogger / pomegranate / 3044 posts
@Mrs. Palette: that’s a good way to look at it, thank you!
@kml636: @Adira:
thanks mamas!
@Mrs Green Grass: I guess our D’s are pretty similar in some ways, overcoming obstacles
thanks for your continuing support!
@Amber: very true! the big one left is short gut syndrome, and I honestly have no idea how it will affect him long term
and thanks so much, you’re very kind!
@princessandthebee: that’s sweet of you, thank you
grapefruit / 4712 posts
Just wanted to drop by and say that I love how open you have been about D’s medical journey. I think it’s important to see how medical professionals change their minds and the diagnosis of your LO. I have never seen you as imposter, you are on the same medical journey with D doing what’s best for him.
nectarine / 2821 posts
Your posts are always so interesting. And wow, how unusual! D has come a long way, and anyone who knows anything about short gut is already completely impressed with your care and progress. You are such an amazing mama and he is a true fighter!
pomegranate / 3533 posts
grapefruit / 4731 posts
Wow what great news! I’m so happy for you!
I think I would feel exactly how you do. You were in the trenches with these friends and somehow you got lucky. You probably feel like the relationship with them won’t be the same anymore. It’s possible, it’s human nature, a lot of them will feel betrayed and jealous, why not their child? But I think the friends that stick with you after this news are going to be your true friends for life. They will understand that a mistake was told to you and will be so happy for you.
Good luck! Don’t let this taint such good news for your son and family.
blogger / pomegranate / 3044 posts
@Raindrop: such good advice! thank you dear
@MrsRcCar: @junebugsmama: @FliegepilzHut: thanks mamas!
blogger / cherry / 204 posts
What sensitivity and honesty you bring to this announcement, I think that is wonderful news for D!