...And in the air, the fireflies, our only light in paradise. We'll show the world that they were wrong, and teach them all to sing along; singing Amen I, I'm alive. Amen I, I'm alive...

- Nickelback, If Everyone Cared

For All The Right Reasons Album



And I'm singing Aaa-ayyy-men, I'm alive!







William Leonidas November 12th, 2009
My only regret is that I cried so many tears while I waited for you.


"...I'll try ~ but it's so hard to believe. I'll try ~ but I can't see what you see. I'll try and try to understand the distance between the love I feel ~ the thing I fear ~ and every single dream. I can finally see it. Now I have to believe all those precious stories. All the world is made of faith ~ and trust ~ and pixie dust. So I'll try ~ because I finally believe. I'll try ~ because I can see what you see. I'll try, I'll try ~ to fly..."

Jonatha Brooke "I'll try"


Fear thou not, for I am with thee; be not dismayed, for I am thy God; I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness. Isaiah 41:10




Now the word of the Lord came to me saying, "Before I formed you in the womb I knew you, and before you were born I consecrated you..." Jeremiah 1:4-5




For Thou didst form my inward parts; Thou didst weave me in my mother's womb. I will give thanks to Thee for I am fearfully and wonderfully made; wonderful are Thy works, and my soul knows it very well. Psalms 139:13-14



Monday March 5th, 2010

So Why Stinkerie?



It's simple, really. It's the first thing I whispered against my newborn little Dumpling's temple as I held him alone for that very first time. "There's my Little Stinkerie." And all was right with the world as I brushed my lips across his delicate dewy soft newborn-pink skin and sniffed at his sparse smattering of downy soft hair. Corny and sappy, huh? I can't help it when describing my new Little Puppy. But don't get used to it - I have been told I am "irreverent."



Anyway, it just came out and he's been Stinkerie ever since. As well as Stink Pie, Stink Pot, Stinkey Pete, Little Stinks, Stinks, Puppy, Ducky, Baby, Baby Head, Baby Head Jenkins, Jack, Jack-Jack, Jackie Boy, Jax, Snork, Snorkis, Snorkle, Billy Boy, Billy Bob, Bobby Sue, Billy-Joe-Jim-Bob, Will, Willie, Willister, and the name given by my mentor turned friend Beth - Snake. When I write to her I call him either The Snakester or Slither! And of course, Dumpling, because he is my Little Dumpling - warm and soft and comforting. It's alright to combine comfort food with baby names, right? Have you ever watched the movie Where the Heart Is? If you have, you'll know why I mention this in my defense!



Long story short, you're likely to encounter any one or more of these names in a single post. Because I can. It's my blog!





Something to Consider

Bad decisions make good stories.

Something to Think About

With any pregnancy, there are concerns. With any child, there are worries. When you have a diagnosis of Down syndrome, you know what to worry about. You know what to look for. You have a plan of action. With your typical child, there is no limit to the things that can 'go wrong' or 'happen.' There's no place to focus your worry and concerns. 'IT' will always be out there, waiting. You'll always be on guard. Even when the child is 55 and has grandchildren. With Down syndrome we have a battle plan. With Down syndrome, there is a finite number of things that can go awry. With a typical child, there's isn't. It's a crap shoot. I'm sticking with the Ds and taking the other two back to the hospital for a refund.

Head Above Water


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Friday, November 19, 2010

Really?

As in, Is that the best I can expect? Excuse me while I have a WTF moment. And yes, I said that, in spite of the fact it may offend some of my more lady like readers' sensibilities. I am really stunned. Really dismayed. There's a blog that I follow, as do many of you, that is viral in it's popularity. I initially started following the blog because of the author's amazing and poignant account of her youngest daughter's birth and the surprise diagnosis of Ds. It was moving like few things I've ever read. I've stuck around because the pictures are beautiful and some of the stories are kinda funny. It's nice to see another Mom's slant on this lifelong career called Motherhood.

When I read that this author's blog had been nominated for Best Special Needs Blog, I just kinda shook my head. I even considered emailing the author to tell her why I love her blog, but also why I would never even think of it as a special needs blog, much less a Ds blog; nor would I ever consider voting for it in that particular category. Why? Because to coin a phrase, What have you done for me lately? Or ever, really? This blog is dynamic and fun. But the author mentions Ds about as often as I change the oil in my van. I empty my vacuum canister more often than this author mentions Ds. Or the struggles, questions, challenges and mind boggling endless therapies and techniques, frustrations and head scratching that comes along with it. Recently, the National Down Syndrome Something or Other gave this particular author a big honor for advocating for Down syndrome. Really? Why? What has this author done? Where was I? Did I miss it? Where was the advocacy? Seriously. I'm not trying to be sour grapes or bitter apples, but just where is the advocacy? Because clearly, I missed that post.

Then last night I had no work yet again, so after The Littles were in bed, I caught up on my blog reading. As always, I read my top four favorites first, this particular one being #4 in my favorites list. And I was stunned to see that this blog won the award for Best Special Needs Blog category. There were so many other categories this blog could have easily and deservedly won. Best Photography, for one. Best Photo Topics, for another. Most Funky. Most Unique Writing Style. Best Blog About Motherhood. Most Fun Ways to Have Fun With Your Children. There are so many wonderful things about this blog, but I have to say, I would have been less stunned if it had won something like The Best Farmer's Almanac Blog. Which really is funny actually, because the author has, in fact, just started a small backyard garden.

So please, write me a comment and tell me what the heck I'm missing. I've never gone to this blog with my questions, concerns, or when I'm needing advice. I've never encountered a problem related to Ds where I've remotely, much less immediately thought, "Oh, I'll get the answers on what to do..." on this blog. I still love this blog. When I'm not working or exhausted, I tune in almost daily to see what the author has been up to, turn away a little sad if there's nothing new posted. Sometimes I just cruise through older photos that I've already marvelled at dozens of other times.

For this blog to win this award kinda makes me feel like I'm back in high school and I'm supposed to vote for the Prom Queen. And the nominees for Prom Queen don't even know who I am. They don't know my name. They wouldn't smile at me if they sat in a circle around me in English while they copied off of my test. It just feels like high school all over again. I'm just sayin...

Uh-oh, uh-oh-uh-oh!
Uh-oh, uh-oh, uh-oh, uh-oh!
"Four years," you'd think for sure...
"That's all I've got to endure."

And then when you graduate...
You take a look around and you say:
"HEY WAIT!
This is the same as where I just came from...
I thought it was over!
Awwww, that's just great!"

And you still don't have the right look,
and you don't have the right friends,
Nothing changes but the faces,
the names and the trends...
High school never ends.

"I've seen it all before!
I want my money back!"
~High School Never Ends
~Bowling For Soup

Post Script: So there's no mystery which blog I'm talking about. That's pretty clear from the comments and the many private emails I've gotten off-blog. It's up for Overall Best Blog now. That I could actually get behind, and I might even vote for it myself, because it is a great blog. But it's still not a special needs blog. Even if it irritates people that I said so.

11 comments:

Adrienne said...

Must say I thought the exact same thing. Great mom blog? Yes. Great advocate for DS, not so much.

Tracy said...

Thanks Adrienne!
I've been stewing about whether or not I should write what is sure to be a controversial post. Some of the ladies over on BBC really tore into her, like the extra chromosome was supposed to make her perfect. Did that happen for you? Yeah, me neither! Anyway, I wish her no ill and I continue to read her blog as always, but I'm muddling to myself over exactly why she's so "it." I think it's a high school popularity thing.

Love your pics of Bennett and the girls...and your nose probably looked worse to you than anyone else! Good you could laugh about it...and I will continue to pray for yours and your Dad's health!

The Fluck Family said...

i've been wanting to write this same post even before she won her newest award. i was stewing about this months ago. i like her pictures but as you've said, there isn't anything really about special needs in her blog at all. i know at least a handful of other blogs that i follow that have great pics, and are funny, or thought provoking but actually focus on their special needs child/children...and actually deserve an award. or a spot in parents magazine.

Tracy said...

Well now I'm going to have to go check out your blog!!! Your link picture is great...love Rachel. And I am seriously hoping that you'll have pictures of Jack and Dizzy too! Jack, well, you already know I love that name...and Dizzy? I want to see the dog named the same as my perpetual state of being! Happy reading...heading there as soon as dinner and baths are all done!

Jen Currier said...

Tracy- I also agree! While I love her blog, it is frustrating that someone who has the attention of so many usually just glosses over the fact that her youngest has Ds. There is one small way that I think she advocates, however, and it was brought to my attention by an old friend from high school who wrote me the most amazing letter I've ever received.

This friend said that she had wanted another baby but was terrified that the baby would have Down syndrome because of her age. She had already been following said blog and it was showing her that life could be beautiful even with a baby who will face challenges. Seeing this blog gave her the courage to take whatever comes, so she got pregnant and recently just gave birth to her fifth child (w/ no known issues). I'm glad that K's blog gets out to enough people and shows that beauty exists even with Ds in the family, because I think most people assume a Ds diagnosis is the end of the world (I know I did right at first...)

I'm not trying to play Devil's advocate, because I couldn't agree more that her blog should not have gotten a Special Needs Blog nod! (Especially when there are so many actual Special needs blogs that may not have the pictures or the following, but who are beautiful, honest and real none the less- and give a real picture of what it's like to raise a child with special needs...)

And yes, there's a High school popularity element...Cute girl, great photos, and painting the picture of "perfect" that everyone wants to buy into. She's selling and everyone's buying...including me! :) LOL!

Tracy said...

Hi Jen!
Yep, she is popular, and the intent was never to bash her, or her beautiful Littles. I'm still a reader as well...but I'm still shaking my head at the Special Needs accolades! I'm glad your friend was encouraged and the took the chance...congratulations to her!

Jen Currier said...

Hey Tracy- I thought you put everything very well, and I don't see any bashing in your post at all. I really agree with what you've said. It is frustrating to me at times, because as you said, IT IS NOT A SPECIAL NEEDS BLOG! :) Thanks for saying what I think many of us were thinking! ((Hugs))

Anonymous said...

I disagree with "calling her out" publicly. And, I do think she speaks out on/for DS Awareness. Sure, I can think of a couple of blogs that do WAY MORE talking about DS, but were they even IN the contest? Probably not. And, her blog won because of the number of votes she received. Perhaps there were not many Special needs blogs in that category. I can assure you this..she adores her baby girl. She advocates for her needs. She weeps for the unfair things that children with DS have to live with. In the end, she is in the same boat that every parent with a child with Special Needs is in.
I will not judge you. These are my opinions, just as your blog post is yours.
Peace! ~ Jo

Tracy said...

Jo,
I appreciate your candor. And I mean no disrespect in my reply. However, I've read and re-read my post many times since reading your comment and I have to say that nothing I wrote was "calling her out publicly." I had no desire to tear the author apart. She's a Mom doing her best, as we all are. If I'd wanted to call her out or demean her, I would have named her, and her blog, and posted a link to it, then proceeded to ruthlessly tear apart the very few things she has said about Down syndrome. It is not the WOMAN I am taking exception with, it's the fact that her BLOG won these accolades that like many, I feel are undeserved.

Since you are so passionate about defender her, where there clearly was no attack on the author, perhaps you can answer the question I posed in the original post...where in her BLOG is the advocacy? I've been reading her blog since the very day she posted about her Littlest's birth. I feel deep affection for her children, having literally watched the Oldest grow into a toddler and the Littlest grow from an infant to a big girl sitting up! I still go back and read her birth story so often that I remember what comes next. I am still a fan. However, again, I stand by my original statement: "Her blog is dynamic and fun. But she mentions Ds about as often as I change the oil in my van. I empty my vacuum cannister more often than she mentions Ds. Or the questions, struggles, challenges, etc..."

Clearly she adores both of her children. That was never a point of contention. You say that she advocates for the Youngest needs, as I'm sure she does equally for the Oldest's needs, and that she weeps for the unfair things that children with Ds have to live with. We all do that. The point of contention is that she doesn't BLOG about any of this, and mentions Down syndrome so rarely that I still fail to see why her BLOG, not the woman, mother, keeper of hearts, is so special that it won the Special Needs Blog. It wasn't an attack on the WOMAN...it was pure dismay that even in our protected shelter of the Down syndrome community, there's still always a danged (insert cuss words here!) popularity contest. Just like high school.

If you still feel that the BLOG deserves the award, please, do write me back and tell me just how the BLOG has been an advocacy tool. In the mean time I'm going to go back over my post and more carefully word it to reflect my dismay at the BLOG, not the fellow Mommy who wrote it.

Peace~Tracy

erikatx said...

I so agree! I was thinking the same thing.. REALLY "Special needs" umm, she hardly addresses the special needs, i love her blog, but not bc of anything related to SN..

Jenny said...

OMG...I just stummbled across this post and almost laughed out loud...well actually I DID laugh out loud because I thought the EXACT SAME THING!!! It really bugged me that she got an award for pretty much saying nothing about Down syndrome...I follow her blog for her photography, not anything to do with special needs...Sure she had a beautiful heart wrenching birth story that she shared with us...But um, we ALL have that same story!! After she told of the birth, she never really mentioned it much again. For a blog with THAT many followers to me it seems a shame she doesnt advocate more, look at how many people she could reach and educate just by adding maybe one little snippet about Ds per post, not even that! It really is a wasted opportunity in my opinon! Overall she has a fabulous blog...Just not a fabulous special needs blog.