Wednesday, August 04, 2010

Damn...I Just AIN'T Gettin' the Comments Lately

So then I will have to try a fiendish tactic since I am feeling a bit of that ole MELANCHOLIA lately (um, what else is new ya freak?) and I can't seem to generate much interest in the ole Blogzilly over the past couple weeks.

That is what happens when you take a break...people go away. But I get it, and understand. Hell for all I know I offend Mom's all over planet Earth with stuff like that shot of a *gasp* thong in one of the pics up top.

What can I say? I see beauty EVERYWHERE. In the faces of the Special Needs children I see and read about, and in the subtle curve of a shapely back and what an amazing accent the top part of a thong adds to that. Obviously they are different KINDS of beauty, and maybe the point I am trying to make with the selection of imagery up there does not come across, the whole 'slice of my life' type of a thing.

I dunno. Overthinking? You bet.

SO I have a question for you.

And this is aimed ONLY at parents of a child with Special Needs. Because I have my own answer and I am curious what other people's answers mighty be.

Here's the question. And if the answer is lengthy, write about it in your own blog and link to it in a comment.

I have a ___________ with Special Needs, his/her name is __________. If I could have ONE of the many questions I have about his/her 'circumstances' answered that I have never had an answer to, and I could be guaranteed that the answer I am seeking is 100% accurate and true, what question would I choose to have answered the most?

And why?

Talk amongst yourselves...


PS...If I get no takers on this...I'M JUMPING.


  1. Might want to clarify "jumping". Jumping from the top of an ikea stool- not so scary.

    Anyway- I'm covering this tomorrow on

    Awesome idea!

  2. My amazing daughter Maddie has Infantile Spasms. What on earth is causing them?

    If I could have this answer and it would be 100% accurate, even if it did not mean there was a cure, I would be a much happier mama. Uncertainty and this never-ending search for a cause is killing me. Not literally, of course. But it sucks.

    Sorry I haven't commented much lately. Just not having much to say....

  3. Thong? What thong? Never noticed a thong.

    As for the one question ...

    "Why the hell did you do this to my daughter?"

    Give me one more, Ken. That would be, "Why the hell did you then do it to my son?"

    Then when I die, I won't be cursing His name on my lips.

    -SD (aka Job II)

  4. My amazing, miraculous, little ham of a girl is just 2.5 years old. She survived Meningitis at 3 weeks old and it left her with a serious brain injury.

    What will my little girl be like when she is 7, 10...15? HOW will this change her life?

    Damn, I guess that was 2 questions. I'd take either one answered.

  5. My son Luke is 2 1/2 with DS and my question has moved on from "Why Luke?" to "Will we be one of the ones who gets leukaemia and early onset dementia?". I hope the answer is no. And I guess if the answer is yes, do I REALLY want to know?

  6. My son has Fragile X Syndrome (ADHD, autism, mental retardation). My biggest concern is wanting to know that he will be okay after I'm gone. Because he will live a long life and most likely outlive me. It's just scary to think about him needing protecting and me not being there. I'd like to know for sure that someone will be there to be his advocate just like I would.

  7. I have a brother, Charlie, who has Down's Syndrome. My question probably wouldn't be directed toward any type of medical professional, but most likely toward Charlie himself. I'd want to know some of the things that have happened to him (abuse - both physical and sexual) since his mom passed away and if there's anything I can to make him happier.

    It's something I think about quite frequently. I know this blog post was directed toward parents, but I figured I'd chime in anyway, especially since you're looking for more comments.

  8. My daughter Taylor has Trisomy 9p & Lennox-Gastaut seizure disorder.

    The one burning question I have is "what is it like in Taylor's mind?" What does she think about & is she really as happy as she appears to be.

    I guess that's several questions, but since she is non-verbal, I've always wondered what goes on in her brain.

    Okay, so you sucked us in with a damn good can you help answer my question? *laughs* Yeah, I don't even think the "Great Kreskin" could help with my questions.

  9. Apologies in advance for the novel that I coming. I don't have a blog and there's a lot on my mind. Hoping you will appreciate that it was typed on a phone and therefore the effort trumps the imposition. Hoping if I reel you in with a long comment, you will forget to jump.

  10. I have a daughter with special needs.  Her name is Emma.   If I could have one question answered about her condition, it would be: Did it have to happen?  Now, I ask this question fully aware that the dice was loaded from the start but even a loaded set of dice produces winners from time to time.  So, what happened?  Well, the first hint was a choroid plexus cyst during the 20 week scan.  Choroid Plexus Cysts once were considered soft markers for Trisomy 18 – a condition not compatible with life – but now are beginning to be taken as a normal occurrence of pregnancy.  I have spent a lot of time wondering if this was a sign and after a lot of thought I have come to the conclusion that it was not.   So why is it relevant?  Well, it is relevant because of how it was managed.  A genetic test showed that she did not have Trisomy 18 and then the doctor stopped caring about it.  Several times in the first two years I asked for a scan to see if it had gone away.   I was always told not to worry.  I wonder if we had a scan would her real condition have been picked up.  The second minor issue – a tongue tie caused difficulty breastfeeding so we had it clipped.   Apparently it is genetic.  However we know no one in either family with it.  Was this natures was of keeping her airways clear during seizures – who knows? The next issue: the mysterious vomiting.  Emma started vomiting on her first birthday.  She would look stunned, her face would get dappled and she would throw up and fall asleep for about six hours.  She would do this over and over for two days and then be fine for two weeks and start again.  For several months, as the weight fell off and the developmental milestones dropped and the regression started she was diagnosed with “tummy bugs” every two weeks.  And yes, if you are wondering, we kept saying no – something is wrong here.  And something was wrong: partial seizures with ictal vomiting.  And after test after test for deficiencies, parasites, cystic fibrosis (worst test ever) we went back and said finally we want an MRI to see if that cyst is still there.   It wasn’t.  What was there was a substantial area of cortical dysplasia in the right frontal lobe which “might cause seizures”.   This would lead people to think that yes this did have to happen but it depends on what you identify as “this”.    The “this” for me is “infantile spasms”.  I don’t know when exactly it started but I remember the last cluster of partial seizures and it was two months before I noticed the tiny weird head movements that were the beginning of IS.  It was in those two months that we started to see the out of control behavior, moaning, running into walls and the complete loss of all language and communication.  And so I wonder did the spasms have to happen? Would we have seen any if the partial seizures had been treated and controlled?  For the longest time I blamed the spasms on my daughters pediatrician.  I still do to a certain extent.  But recent events have shown me that there is more to this.  After six medications, a brain surgery, the ketogenic diet, we finally got to a place where these seizures caused by right frontal lobe focal cortical dysplasia seemed controlled.  So we were shocked to find out that she now has a different form of epilepsy unrelated to the structural defect that is coming from the left parietal lobe. It is an idiopathic form of epilepsy that often runs in families – technically if there is a suspected genetic link then this would be cryptogenic if the gene is unknown or symptomatic if the gene is known.  But it says that at some level, no matter what we did, this beautiful girl would have seized.  I think that is what it says.  I don’t know for sure.  And yet, I still wonder, did this have to happen?  Did the smart child who met her milestones and walked on her first birthday have to go through this?  Is there anything that could have prevented the suffering?  Not why though.  Why is way too complex a question to ask.   There are too many variables for why.

  11. Aha. You were saved from my musings. I pasted in my long detailed description of my question from my notepad and google told me no way was it going to publish something that long.

  12. And now I notice it published it anyway. Oops. I'm retiring from commenting.

  13. My son Zac is 22 months old and has cerbral palsy. He is one of a set of triplets (Nic and Kenadie are the other 2). His brother and sister are running all over the place now and Zac wants to do what they do so badly. You can just see it in his face and how he acts. Right now Zac can only "army crawl" around on the ground and can't speak as well either.

    If I could get one question answered it would be, "will Zac be able to walk one day."

  14. This comment has been removed by a blog administrator.

  15. Oh gosh, Ken-ly. ONE question? Impossible.

    But if I had to narrow it to two.

    I want to know who Future Trevy will be. That thought flits through my mind daily.


    My second would be another daily thought...

    I wish I could read your mind, Trevy.

    There is so much going on inside there. I can see it gleaming from his eyes. But I want to know. For sure. And not just rely on mommy intuition.

    Oh and Sinead...two thumbs up for the comment number bump! :)


  16. My strong spirited sweetie Gracie is 3 years old, she was diagnosed with Sotos Syndrome, epilepsy, and had Infantile Spasms (but we beat them).

    I also have two questions...

    1. What can I do to make sure her future is the brightest it can be when her dad and I are no longer around?
    2. What goes threw her head when she has her very familiar Sotos tantrums and meltdowns?


  17. My son is Charlie and he has cerebral palsy, hydrocephalus, and epilepsy (the trifecta if you would). One question? I'm not sure. A toss up between, "what on earth is he thinking?" and "what will he be?"

  18. If you had asked me this question 20, 15, or even 10 years ago, it would be something like, "Will he ever be able to tell me what is wrong? Where it hurts?" That even above walking or pottying or whatever else on "the list"...

    Now, as an older parent....All I can think of is what is going to happen to him if he outlives me? Will he be OK?

    When my son was very young, I had always read about older parents with these concerns...But it really never became an issue until years later...

    Colby is now 25, STILL with no definitive diagnosis...In a nutshell, he is severely mentally delayed (18 mos - 2+ years), non-ambulatory, non-verbal, incontinent, cardiac abnormalities and the "ever popular" daily seizures...

    Who will take care of this young man like I do?



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