She's released more pictures*! (*I am linking to a third site first so no one can find their way back here, Sorry I am so paranoid.) I don't think this is all of them, but I am excited by what I've seen so far. :-)
So what do you think?
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So, I am conflicted about linking it to the boys' blog. I mean, I LOVE the pictures of the boys. (Not so fond of the ones of me, but whatever.) But, and it seems that there is always a but when it comes to me, the write-up is leaving me twitchy.
I think the intent was very sweet, but there is just something about it that stings a bit. Maybe I just overreacting? Too sensitive? (And to be honest, she is a very genuine woman who I am sure understands a bit of the world in which our family lives. I'd guess that if she knew she had hurt my feelings, she'd be very upset. It is not my intention to hurt her either. She went out of her way to do this for us, and I am truly grateful!)
It makes me uncomfortable that she stated their diagnosis. I have no problem talking to people about the fact that they have this as a diagnosis. I do not hide from CP nor am I embarrassed by it. However, I am still hesitant to link that diagnosis to the boys publicly, especially on their blog. (Which, hello, I've already made that link here, but this place is sort of--albeit loosely--anonymous so it doesn't bother me as much.)
I can't quite decide why it is an issue to me, but it is. People are stupid and insensitive and make me want to hit them. Couple that with my fierce desire to protect my guys from that kind of crap...and well, I've just stayed away from publicly declaring what's up. I have told quite few people directly (and dude they don't walk so they know something's up anyway) but I am just leery.
I imagine the photographer would remove those two words from her post should I ask her to do so. But my head is wrestling whether or not I should. Maybe I just need to relax and not try to control everything.
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So that gives you two things to weigh in on today. I'd love to hear your thoughts.
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1 day ago
20 comments:
The photos are beautiful! You are the sweetest little family, and I love all the smiles.
As for the two words you want removed, if it is unsettling, then speak to the photographer and request a change. No need to let this special photo-experience be tainted.
Honestly? It is who your boys are. It is a part of them and will be for the rest of their lives. It doesn't define them. It is not them, it is just part of them. Your boys are adorable, wonderful kids who happen to have a disability. By hiding that from the world you are teaching them it is something to be ashamed of. It's not. Own it. Teach them not to be ashamed or when they get to the real world people will try to convince them they should.
1. Those pictures are amazing. Every one of them brought a different emotion. She did a great job.
2. It seems that she called it like it is. Part of her thing is to offer sessions for families just like yours and it seems to have worked out magically.
3. If something rubs you the wrong way, by all means, mention it.
This is my opinion. Those pictures are absolutely WONDERFUL ! They capture so much love and I would blow up and frame each and every one of them.
That said. Don't ask don't tell. My parents haven't openly talked about my being gay to friends, neighbors. They love me and they show support in different ways.....but they just don't talk about it because it makes them uncomfortable.
All that says to me is that they don't fully accept who I am. They are ashamed of me. If they weren't, they would shout it from roof tops. They wouldn't care who knew and what opinions people might have of me. They would take it as an opportunity to say, "hey, my kids gay and she's great"
You have two amazing and wonderful little guys who have CP. Don't let the labels some people have put on CP define who they are. Make you ashamed. There is no shame or sadness in who they are Stace. and they will know it if you try and hide it.
That's just the way I feel.
Wowza, Stacie! Your family is so beautiful. You can see the love in everyone's faces and smiles. Truly lovely.
Her description of your family, I thought, read and sounded in my mind just fine. It is your family and who you are and 'those two words' didn't fly off the page. They were just there telling a story. I will tell you, her use of the word 'normal' did jump out at me though! I would want that one removed,if any words are going. Cindy
You know, I see those pictures and I do not even think about their diagnosis even though it is stated. I see three happy little boys that obviously are loved, show love, and are all about exploring their world. I love the intense looks as they are checking out the blades of grass and the sheer joy that shines from them as they play together. That's my two cents....
OK, first of all, the pictures are fantastic. You all look great (you included!), and that last one brought tears to my eyes for some reason. I loved them.
I think what she wrote was simple, truthful, and without judgment. Ultimately, the question is how much peace you have made with their diagnosis. People do suck, there is no question about it, and you're just a mom looking to protect your boys from the ugly in the world, but as you said, people already know something is up since they don't walk. Maybe giving that something a name can be the first step to educating people, showing people that a diagnosis of CP means some physical issues they have to work through, but doesn't mean they aren't intelligent, charming, amazing boys. Just my thoughts (and only because you asked).
The pictures are seriously fantastic!!
I say if it bothers you, ask her to remove that part. You're the momma bear and I completely understand wanting to protect the boys from idiots...
OMG, beauuuuutiful pictures! SO BEAUTIFUL! They actually brought a tear to my eye.
I can understand why her writing that write-up would make you upset; you being uncomfortable with that label/diagnosis isn't a new thing and you've often shared that here. I think if the write up IS going to keep you from sharing the pictures with your real-life friends and family, then you SHOULD tell her that it upsets you and ask if she could remove it. Something as lovely as these pictures should be shared, rather than having a facet of it make you feel uncomfortable.
The pictures are beautiful. I especially love the last one with all five of you. In terms of whether to link it to the blog or not, I don't think anyone can answer that for you -- you have to be in a place where you are comfortable.
I would suggest though that you take out from your post the reference to her child's issue as she explicitly states something different on her site. (and perhaps don't publish this comment, since there is no reason to draw more attention to an issue that might be private to her and her family.)
Love the pictures!
I think I'd leave the diagnosis alone. It is what it is, you know? And it's hard and it sucks, but .. more and more we all have to get used to our kids being what they are because they're heading off to school soon, you know? It sucks though.
I loved ALL of the photos. Your boys smiles would light up a room! Very happy kids..I am sure you are proud of all of them. :)
Anon at 1:32 - Point taken. I've fixed that issue.
I think the photos are magnificent. You look like a very happy million bucks.
Not sure my opinion is worth a nickle as I dont understand special needs parenting. But. Yeah, I bristled a bit too. Maybe because you prepped me, maybe because I am protective over the boys too? It felt a little us and them.
Dont wink wink at me, implying your child who misbehaves is on the same par with a child who measures everything a little differently.
Love those boys my dear.
I think the pics are fabulous! My kids don't have a diagnosis- but my father and several sibling have serious psychiatric ones. I'm a psych nurse, too, and the big thing we wrestle with is stigma. If you met my father, you would instantly know that something was not right with him. There have been times I have wished he had a less stigmatizing diagnosis than schizophrenia. He is harmless, but it makes people afraid of him. If we were able to speak openly about it, that fear would not be as great, and maybe not there at all. I try to not wear my heart on my sleeve when it comes to sharing the diagnosis. If it comes up in regular conversation, I share. If it's relevant to the story, I share. I think with the boys and this session, it's relevant to the story and OK to share.
Hey there, here from ICLW so apols if I am blundering a bit into stuff i obviously haven't been around for.
Heather's comment above stands out as representative of what I couldn't put into words. I did some work with kids with disabilities and it was always emphasised throughout our team that 'kids first, condition second' (relevant to my specific profession). There's always some 'difference' somewhere, if people look hard enough.
That said I don't have my own kids, just experience in the world of varying levels of function, so appreciate there's perhaps a big motherbear thing that I haven't felt yet!
Love love LOVE the pictures! Especially the very last one, that one just blew me away...
As for the other thing: I was thinking the same thing Heather said.
CP doesn't define WHO they are, but it IS part of them. It will always be a part of them. And the more you try not to name it, the more they (and other people) might start to think it is something to be embarrassed about.
That said, the 'my kids are normal (wink wink)' DID rub me the wrong way. If she would have said hers were healthy and she was thankful for that, it would have been fine. But stating it this way made me shudder.
Your pictures are fantastic. How special to get a photo shoot where you all can be in pictures.
I understand your wariness about the diagnosis. Heck, my family who hasn't seen D hasn't heard D's diagnosis unless the family who has seen him has mentioned it or his delays. He can't walk (yet!), but doesn't look noticably different in most pictures...I expect people who have kids with CP might notice he looks different and others might be beginning to wonder why he never is standing when not at some object, but who knows. I haven't talked about it because people associate so much additional impairment with CP, not just the motor issues he seems to have. I waver between that not being fair to him since I'm so proud of him regardless and helping continue to foster a misconception of what CP can be and yet trying to protect him from people who will judge and treat him as if he has lower potential just because of those 2 words. I kept hoping he'd start walking and blend in a bit more before I'd have to talk, but it appears I have no such luck.
L*O*V*E the photos -- love love LOVE THEM!!!
Stacie, it's taken me far too long to respond on this... first, let me say that the photos are great!
I agree with Mijke that the "my kids are normal" comment more than rubs me the wrong way... especially if you say her son may be on the spectrum. However, I don't think you can ask her to remove that without causing some conflict between the two of you. Normal is not a word I use anymore, but maybe she is not clued in to that aspect of special needs parenting just yet...
Anyway, you feel how you feel and that is hard to change. I totally get trying to protect your boys from stigma or stereotyping based on their diagnosis. For a long time, I felt ultra ultra sensitive when out in public with Al.ex. I felt like everyone was staring and wondering why he wasn't walking yet. Obviously this was even more pronounced when he had his walker. It has gotten easier (and harder) now that Alex's disabilities are not quite as obvious to the untrained eye...
I had a very hard time talking about it with anyone outside of family, mostly because I felt obligated to project some type of future for Al.ex, when we all know that NOBODY knows what our kids will or won't be able to do.
Your kids are awesome. CP is a small part of them and it does NOT define them. But - I get why you don't want to shout the dx from the rooftops - you are proud of THEM as people because they are awesome. It just plain sucks to deal with everything that goes along with special needs. It is just damn hard.
Hugs to you as you figure out how you feel on this one... I really understand your feelings on this one.
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