Monday, March 31, 2014


...“Many years ago, I was at a national conference on biogenetics.  It wasn’t purely a scientific conference; it was open to the public.  The idea was that people from all walks of life – intelligent, thoughtful people – would discuss our dreams about what this technology might do for us.  There were panel discussions on the eradication of MS, and Parkinson’s, and Lou Gehrig’s disease, and on and on.  We’d identify the genetic flaws, and no one would suffer from them again.

It was tremendously exciting, because there was a feeling that we really would have the potential to eradicate all human suffering from the earth.  There was a feeling of almost being godlike.  It was electrifying, Mr. Samuels.

I was as exhilarated as anyone.  But then, on the last day of the conference, a young man stood up in the audience.  We had all been listening to a speech about how prenatal testing was showing promising signs of making it possible to eliminate Down Syndrome.  And... “ Dr. Fukuyama leans across the desk, her eyes intent on mind. “Mr. Samuels, the young man who stood up int he audience to talk had Down Syndrome himself.  He was the head of a self-advocacy group of adults with down syndrome.”

I nod.

“We were all a little taken aback,” says Dr. fukuyama. “But this young man stood up, Mr. Samuels, and he said the following.  I have never forgotten it.”

“’I don’t understand.  We don’t make any trouble.  We don’t steal things or kill people.  We don’t take the good jobs.  Why do you want to kill us?’”

For a few secons I cannot breathe.  I stare at Dr. Fukuyama.  She stares back at me.  Then she smiles, a little sadly.  “That moment changed everything for me.  My excitement disappeared.  I got a glimpse of the world we really might create, with our high-flying ideas about the eradication of suffering.  A world in which so many people are found lacking.  Are considered unfit even to be born.”

- “Double Helix” by Nancy Werlin

The preceding is an excerpt from a young adult novel I just finished reading... and it stopped me in my tracks. If you have a child with down syndrome, or maybe another disability, then you know this world all too much.

Ive heard several parents of children with down syndrome asked if they could would they take away the down syndrome.... and almost all of them say "no, its part of what makes their child who they are".... maybe this is callous, but if I could, I would absolutely take away Wallace's down syndrome - not for me (ok, maybe a little bit b/c it would be nice to know what he is thinking sometimes), but more for Wallace - Wallace has his own personality that he would absolutely retain with or without the down syndrome, but it would make Wallace's life easier and more open and I would love to give him all the opportunities that my other kids would have - I would love for Wallace to be able to speak and tell us what he wants, or why he did something... to be able to stand up for himself when another kid says "wallace did it" and he cant protest even though he did nothing wrong... that he wouldnt be so misunderstood...  but if we couldnt have Wallace without the down syndrome, we definitely would still take him with it... :)

Did you know that 92% of babies that have down syndrome are purposefully aborted?  Im not going to judge anyone for their decisions - goodness knows, I can test that parenting alone is hard, but parenting a child with special needs is really hard some days - its also really, really good some days too (and no, we are not saints - if it was your kid going through something, then you do what you gotta do, thats just parenting).... but I hate that as society we equate down syndrome with being stupid or worthless... believe me, Wallace is seriously not stupid or worthless.... he is very smart and very good at getting what he wants and reading people... but it aches my heart that people can look at him and think its ok to treat people like him like they arent even human.... still as a society, we are using the word "retard" as if thats ok... its not.... even if you "dont mean it that way" - if you really dont, then find another word, how is that so hard?

I think weve come a LONG way in becoming more accepting of people who are different, but I also still think we have a LONG way to go.... my mama-bear insticts want to fight, but I know that isnt always the best way.... I just want to do what I can.

Thursday, March 27, 2014

blah, blah, blah

We are boring at the Talley household... well, maybe boring is different - "normal" people would probably find our life hopping, but we have settled in and so now, most days, I have no idea what to write about.

This week has been busy.... Ive been given different things to do at work which require me to work 8-5 some days, whereas I normally get off at 3.... the afternoon drags and I hate it... but you do what you gotta do, I guess.

Daniel is still coach of the tennis team... and he might tell you otherwise, but I think he is really enjoying it... they have an out of town game this afternoon, so Im eager to hear how it went

And Gabe is leaving on a merit (gift program) trip this afternoon after school... he will be living in a cabin with a bunch of other 4th grade boys for a few days.... his first real trip away from home... Im nervous for him b/c he is my shy one, I really hope he has a good time

The rest of us are just hanging in there.... :)

Several people have asked how Wallace is doing since I havent written too much lately - and the answer is that he is doing beautifully... he has been good at school for awhile now... it was a rough start to the semester, but having dad close by to administer "encouragement" when needed has made a big difference - it has also helped having teachers who actually enjoy having Wallace in class and listen to our suggestions... so Wallace is doing good.... he will move on to the 4th-6th grade building next year so they are starting a little bit of transition now to get him used to where he will go and what he will be doing..... oh man, honestly, I am dreading it!  Wallace does not do well with change, and being in classes where he will be the smallest and youngest, I just dont know what to expect... and every time he has been in a great classroom and has to transfer because he is getting older, well... it just hasnt gone well... Im really hoping for a different result in the fall, but I cant hold my breath...

On my soapbox for a minute.... please dont tell any parent of a child with down syndrome that 1. they are the sweetest child ever, 2. I could never do that, 3. how could you punish/discipline them? 4. they are always the happiest people ever.    None of those are helpful or true.... we LOVE Wallace, he is our little monster... but he is our little monster - he can be BAD if he wants too.... just like every other child in the world, down syndrome or not... We arent special or saints - we do what we have to for our children, chances are that you do the same thing.... off my soapbox

Also, Willow is doing wonderfully... her speech is coming along really well and we have forgotten how tedious a two year old and their endless questions can be sometimes.... we love it and wouldnt trade her, but for real it gets old to be asked the same question every 30 seconds for 10 minutes straight sometimes... :)

But really, we are doing good.... 2014 is definitely a learning year for all of us, but as I said, we are finding our new normal...

Any questions?

Wednesday, March 19, 2014


Did I really let Tuesday go by without posting?

This past weekend was so much fun... we went over to Birmingham and visited the Botanical Gardens - I have no idea why weve never been there before - its free and its huge - we only covered about a third before the kids got hungry for lunch, so we will definitely be back... after that, we headed across the street to the zoo and had a picnic lunch outside, and then into the zoo - which is also mostly free b/c a year membership is the one christmas present we get for our family so you can go for a whole year for free and thankfully it was a warm, cloudy day so it was nice to walk around

Later on that night, we went and found the color tunnel - I just found out about this and it is so cool - the lights change and its just so pretty... we all had a ball with that!

And it didnt start raining until our drive home... so yeah, that was a great day!

And then Sunday, we layed around the house, took naps, watched Darby O Gill and the Little People, and pretty much did nothing....

Yep, and thats pretty much how you do an amazing weekend right there!

Tuesday, March 11, 2014

So yeah...

So I guess you can tell from the last post that we went to the beach a few weeks ago... this is the one trip we always take during the year.... mostly because its off season which means hotels are cheap and when its Mardi Gras - the parades are free.... and so is the beach.... so its actually a pretty cheap trip... and thankfully, this bipolar weather decided to be nice and let us actually enjoy that weekend... :)

This week is spring break at our house - well, at least for Daniel, Gabe, Emma and Wallace.... me and Willow have to carry on as normal.... supposedly Daniel is cleaning the house and such... but I think his intentions might be just a bit bigger than his opportunity this week -especially with 3 kids all to himself.... but we will see

And just so ready for spring to be here... so tired of the weather being amazing and then going back to cold, back to hot, back to cold.... its so nice today, but supposedly going to turn colder again tomorrow.... Im already predicting that this back and forth weather - this - is our spring.... after the last cold snap, its going to go straight up to 80 and then 90 and then its all uphill from there....

We shall see....

In other news... if anyone is looking for wedding photography - Im doing a special right now... check out to check that out and pass it along.... we are still looking to pay off the last little bit of the adoption

Besides that, not too much going on with us.... just enjoying each other as much as we can.... :)

So whats happening with you lately?

Tuesday, March 4, 2014

The weekend

Oh, the things you can find to do in a weekend... :)