I have a daughter with the most severe form of Spina Bifida. I don't have a blog, but spend a lot of time looking at other SB blogs. The blogs of my online friends are very open about the heartache and challenges of SB.

I don't look at Kelly's blog often, but reading this thread made me realize that the reason that it doesn't draw me is that it just is applicable to my life. Her baby (at least right now) "only" needs some extra therapy. I think the difference between DS (for at least some kids) and SB is that SB almost universally requires two major surgeries, a NICU stay, PT weekly, cathing your child every few hours, medications, CTs/MRIs, shunt scares, decompression surgeries, etc etc. There is just no way to gloss over having to take you child into the hospital for her third shunt revision in a month! No lollipops and sunshine there, believe me! (hitting head on keyboard!)

So, I admire her optimism. I don't fault her for not dwelling on the negative because frankly right now, her little baby girl is healthy and developing. (from what she has shared.) If she was glossing over surgeries, etc, than I would think she wasn't being forthright.

Also, the times that have been most difficult for me dealing with my daughter's diagnosis have been when things have changed from the status quo. When we first found out, of course. When she got her shunt, when we started cathing, when she got her first wheelchair, when she is going through shunt failure, etc. Otherwise, we just adjust, it becomes normal, and we move on with our lives. Kelly may have only had one major shift for her family so far - the inital diagnosis. From what it seems like, so far her little girl has done very well considering the challenges.

I remember reading her birth story. I thought it was incredible, and very very honest. As for the rest of the blog, she may be just a generally happy, optimistic person. Having a child with SN is going to be harder for some people than for others. I don't think she is being fake.

wow, you haters are really something.

Anonymous wrote:Hmm...
I was just curious as to why she is soliciting donations on her blog?

I know she says it is for NDSS, but why can't people contribute directly rather than through her website? I don't know, it just seems possibly ego driven, "Look at me and my baby, look how much money WE raised!"

IMO, somewhat annoying.

Eh, she's raising money for a good cause. That's nothing to bitch about.

Hmm...
I was just curious as to why she is soliciting donations on her blog?

I know she says it is for NDSS, but why can't people contribute directly rather than through her website? I don't know, it just seems possibly ego driven, "Look at me and my baby, look how much money WE raised!"

IMO, somewhat annoying.

I have a friend who has a DD with DS. She always says that the weight of her DD's disability didn't fully "hit" her until her DD was about 3. Obviously it was always there, but it wasn't until then that the differences in what her DC could do compared to other non-affected kids her age became much more pronounced. So maybe some of the tougher obstacles are yet to come and KH is choosing not to "go there" until she has to.

Anonymous wrote:My son has is own set of issues...nothing as long term as many other children. And I have a blog. Do I write about his therapy on the blog- no. Somethings are private and raw and aren't for thousands upon thousands to read, you know? I think she has put a positive and optomistic spin on a really difficult situation. She chooses to be perceived as wearing rose colored glasses, its how she wants to remember herself and be remembered. I enjoy her positive attitude and how she seeks the beauty in something challenging. I think it's nice that she doesn't have a pity party, like so many SN parents.

No one is asking her to have a pity party or constantly discuss therapy and personal issues. It's a question of balance and what strikes people as a little unreal. Ditto the difference between an optimistic spin and a saccharine dose of surreal prettiness.

I remember weeping while reading her birth story when I first got pregnant. I didn't know she had a blog - I love her play list.

I posted criticizing earlier and have to admit I'm weeping at the birth story. It was really well written and I appreciate her honesty. It gives me a little hope, as we try for another child, that no matter what happens we will be okay.

Her kids seem really sweet and so, so cute.

My son has is own set of issues...nothing as long term as many other children. And I have a blog. Do I write about his therapy on the blog- no. Somethings are private and raw and aren't for thousands upon thousands to read, you know? I think she has put a positive and optomistic spin on a really difficult situation. She chooses to be perceived as wearing rose colored glasses, its how she wants to remember herself and be remembered. I enjoy her positive attitude and how she seeks the beauty in something challenging. I think it's nice that she doesn't have a pity party, like so many SN parents.

She says in the FAQ of her site:

Q: In response to the following: "I feel inadequate reading blogs about moms who do so much."

A: My blog features the things I'm passionate about and feel confident doing like photography and crafts. It doesn't feature the things I can't do well like organizing, whipping out a spreadsheet, sewing, gardening, playing the guitar, etc. I wish I was good at some of these things, so I ask my friends who are to help me, or maybe I'll read up on them to inspire me. I accept the fact I may never be naturally organized or able to write a song. But we are all good at something. I certainly wouldn't judge someone who doesn't take good pictures or do crafts with their kids because maybe that's not what they enjoy. And that's the beauty of a vast world full of rich differences of people and talents and loves. What is it that moves you, fuels you, inspires you? Find it, own it, live it. And maybe, if you feel inclined...blog about it.

http://www.kellehampton.com/p/faq.html

Anonymous wrote:Please tell me I'm not the only one who could not get past the photo of her in her that gown with her kids in the woods.

I can not stand people who take themselves that seriously. In two seconds, I was out. What a load of bull shit.

Thanks OP - sorry you had a bad experience but I actually feel like a more real person after those two seconds.

Okay - I just posted this and feel a tiny bit bad because of the whole special needs thing. I am sure Kelly is a great mom. I have a real problem with parenting blogs because it is a very self important endeavor. We have one, but it is private, for just grandparents and our siblings and a few other people who actually want to hear about the minutia of our lives and see tons of pics of our kid. And really, it is heavy on pictures and light on text and self-analysis. It's very bare bones and there is no way I would expect anyone beyond grandparents and close relatives to care.

There are ways to be a good parent without doing crafts. My mom is the best mom, and best grandmother in the world, and my favorite story from my childhood is the one time she attempted for us to do crafts, she started a fire in the kitchen and the fireman came. But even with a craft-free childhood I felt really loved, secure, and taken care of.

Please tell me I'm not the only one who could not get past the photo of her in her that gown with her kids in the woods.

I can not stand people who take themselves that seriously. In two seconds, I was out. What a load of bull shit.

Thanks OP - sorry you had a bad experience but I actually feel like a more real person after those two seconds.

Anonymous wrote:15:39 again. Yes, part of my disappointment is that the post from the day Nella was born was so raw, and so real -- and then -- nothing. Nothing after that. When I read the post about Nella's birth I was very excited and felt that I was finally onto a blog where a special needs mom was expressing something real. But since then it's just been the usual "Trip to Holland," and my daughter is just such a miracle, such an inspiration, we all think of her as a gift from god, she's changed my life in so many ways....blah blah blah. It's not real....she talks about getting people to contribute to Down Syndrome all the time, but she doesn't even really talk about Down Syndrome. Example: her blog entry from when Early Intervention visited her house. She has pictures of them evaluating Nella, but then...what? What are the effects of DS on Nella? What does it mean that Nella has DS...there is no thought process here...again, it is all sunshine and lollipops and what an amazing gift I've been given. I just gave up because it was like eating a bowl of sugary cereal.

THIS. Totally agree.