Just A Quick Pic

We are frantically preparing for "Frankenstorm."  Take that with a grain of salt.  We did succumb and trek to Wal-Mart (ugh!) to purchase some non-perishables and we had to clear the outside of our little house, but it hasn't been hard.  I do still need to get some cleaning done and make meals for James and us adults in case the power does go out, but the stack of logs by the fireplace makes me think this may be fun.  Maybe.  We'll see.

So, as I shuffle off to clean the bathroom and blend sweet potatoes here is a quick picture to enjoy.  I call it "Morning Angel."  Hahaha.  :D

More soon, unless our power is out for days!

With love.

The "R" Word

Hi, all.  I started this post a couple weeks ago and have been struggling to finish it.

I have always found the "r" word (if you haven't guessed, I am referring to the word "retarded") degrading.  I began to hear it more often in middle school as friends used it as a way to flippantly brush aside moments of bad judgement or clumsiness.  It was "cool" to use this word because you could turn your every misstep into a joke.  I will, ashamedly, admit that I did slip into this habit a few times.  But, each time I casually used that word I felt revolted.  I knew that I was disrespecting a group of people who are already so often disrespected and deserve the dignity afforded to each human being.  I decided I would never use the "r" word.

It continued to bother me when others used it so casually.  But, what was I to say?  I didn't know how to politely point out that it was a rather degrading thing to do.  So, I just kept my mouth shut and retained my own principles.  Then, I had James.  My beautiful baby boy.  I saw firsthand what people were referring to when they used the "r" word.  But still, what do you say to politely point out that the "r" word is less than kind even if you don't mean it personally?

Here to finish what I started is a beautifully written letter by a young man with Down Syndrome to Ann Coulter who so frequently throws the word around on air.

An Open Letter to Ann Coulter

Posted on October 23, 2012by Tim Shriver

John Franklin Stephens

The following is a guest post in the form of an open letter from Special Olympics athlete and global messenger John Franklin Stephens to Ann Coulter after this tweet during last night's Presidential debate.

Dear Ann Coulter,

Come on Ms. Coulter, you aren't dumb and you aren't shallow. So why are you continually using a word like the R-word as an insult?

I'm a 30 year old man with Down syndrome who has struggled with the public's perception that an intellectual disability means that I am dumb and shallow. I am not either of those things, but I do process information more slowly than the rest of you. In fact it has taken me all day to figure out how to respond to your use of the R-word last night.

I thought first of asking whether you meant to describe the President as someone who was bullied as a child by people like you, but rose above it to find a way to succeed in life as many of my fellow Special Olympians have.

Then I wondered if you meant to describe him as someone who has to struggle to be thoughtful about everything he says, as everyone else races from one snarkey sound bite to the next.

Finally, I wondered if you meant to degrade him as someone who is likely to receive bad health care, live in low grade housing with very little income and still manages to see life as a wonderful gift.

Because, Ms. Coulter, that is who we are - and much, much more.

After I saw your tweet, I realized you just wanted to belittle the President by linking him to people like me. You assumed that people would understand and accept that being linked to someone like me is an insult and you assumed you could get away with it and still appear on TV.

I have to wonder if you considered other hateful words but recoiled from the backlash.

Well, Ms. Coulter, you, and society, need to learn that being compared to people like me should be considered a badge of honor.

No one overcomes more than we do and still loves life so much.

Come join us someday at Special Olympics. See if you can walk away with your heart unchanged.

A friend you haven't made yet, 

John Franklin Stephens
Global Messenger
Special Olympics Virginia

Wow.  I couldn't have said it better.

With love.

Heart Check!

We went in today for James' last post-op heart check-up.  Yay!  We were so excited to hear that his heart looks good and he does need another check-up for a whole year!  Way to go, James!  There are still some pulmonary insufficiencies that we need to monitor as, over time, things could degenerate to the point where he needs a new pulmonary valve, but, if that happens, it won't be for awhile.  And our cardiologist hopes that by that time medical technology will have advanced enough to do this procedure in a catheter lab instead of open-heart surgery.

James has been doing really well!  He is settled into our new house and enjoys rolling all over the new floor.  He thinks the kitchen is a great place to make "floor angels."  He is trying so hard to crawl but just isn't there yet.  We'll keep working.  We broke out the baby backpack when he was really grumpy (teething, ugh!) and tried it again.  His legs fit through the right holes this time and James enjoyed being snuggled close to Mommy or Daddy.  It is actually much more comfortable than I anticipated.  He also went on his first train ride with lots of fun family members and enjoyed crabs in Annapolis (well, we enjoyed crabs, he enjoyed hitting the table).

James is using his highchair now!  Our good friends gave us padding that their daughter used for extra support in the high chair and it has been a big help for James.  The car seat wasn't cutting it anymore as James liked to hunch forward which doesn't make for easy eating.  Check out our happy, messy boy!

I like being messy!

Taking ANOTHER picture?!

Just kidding.  :D

With love.

Tree, Tree, Tree

Sing along with me if you know this one: "Tree, tree, tree, tree, tree, tree, tree, tree, tree.  I love you.  Yes, I do.  Tree, tree, tree. Tree, tree, tree."

No, it isn't a hippie song.  It is Mr. Rogers.  Do you believe that?!  I didn't know anyone outside our family who knew that song until I met my husband.  I guess it was meant to be!

Anyway, today I share a video of James' first real experience with a tree.  Now that we have a backyard we can actually do these things with our son!  He was actually pretty interested and, I think, enjoying country living.

Happy Birthday, Daddy!

A quick post tonight as I am way behind on my James video editing.  James is finally settling into our new place, his teeth aren't hurting quite so much (he is getting his top three all at once as well as the continued arrival of his molars, thank you, Tylenol!), and we are getting into a much better routine.  James is not great at self-soothing, a "normal" delay, but we are trying our best to work him into it.  Now that he is (much!) bigger it is difficult to rock him to sleep.  So, we read him two books, sing him one song, and lay him down in his crib with a blankie.  I am still paranoid about blankets in the crib, but at this point he is strong enough to deal with it, just a mother's worry.  We have tried to find fuzzy sleeper outfits, but few places carry them in his size and fewer carry ones that work with his tube (zippers aren't so great, what happened to buttons?).  He is doing much better with this routine and, depending on the day, goes to sleep with little fuss.  He is liking the comfort of his blankie and I think he is starting to understand that crying is futile (so hard to just let your baby cry himself to sleep, but I know it is in everyone's best interests).  It did take awhile, though.

Things can be a little difficult because he really likes this routine.  His new expression of excitement is to kick his left leg, which he tends to do during the whole process.  But, we still seem to be able to get him to sleep.  Sometimes it is hard for us to push aside his cuteness and be firm in our routine.  :D

Last week was Mark's 26th birthday.  We had a fun time with a delicious salmon and crab dinner (the crabs were an issue as we didn't have mallets, oops!) and apple pie with our new landlords who are supper fun.  My family was able to come visit that weekend as well and we had a great time at dinner and squeezed into our little, box-filled, messy house for a yummy dessert.  James it totally in love with his dad.  I love seeing the way James looks at Mark.  And James is transitioning from "da-da" to the occasional "daddy" which is adorable!

Here are a couple pics from the birthday weekend:

Happy Birthday, Daddy!

Playing with the Rody they gave James for his b-day.

With love.

Goodbye Kangaroo Joey!

We returned our feeding pump today as James is now 100% blended!!!  Yay!!!  It was nice to get the machine and IV pole out of our house and get the go-ahead for more syringes to be shipped to us each month (we had been oiling ours until we were blue in the face).

Here is my post on syringes vs. pumps on my new blog, Ballon Bellies, a practical resource for parents of children with tubes.  There is only so much that doctors can tell us about life with our wonderful children that eat through a tube.  I hope Balloon Bellies can be a resource to help parents with the ins and outs of g-tube home life and living as normally as possible.  Please check it out!

Also, continuing off of my last post on Baby Noah's awesome dance moves I have included a new version of "Call Me Maybe."  I often feel guilty that I don't play more classical music for James.  He enjoys that particular genre and I know the scientific evidence that it is proven to help brain development, I just have a hard time giving up my driving music.  So, I thought this might be a great compromise.  Enjoy!

With love.

Baby Noah's Awesome Moves (And Good Music Taste)

Hello everyone!  I hope you will bear with me as the blog goes through some template changes and I am out of commission with unpacking boxes (we have a little house to live in, yay!).

A quick post tonight.  I love following Noah's Dad, a blog about the life of baby Noah, a 20-month-old with Down's Syndrome, through the eyes of his loving father.  Who doesn't enjoy seeing a father's love for his son and who doesn't love watching adorable videos of such a cute kid?  It's a win-win.  Mark and I woke up this morning, exhausted from our move, to find a video of Noah dancing and it made our day!  I am sure it will make yours as well!  By the way, Noah has great taste in music.  "Call Me Maybe" is my favorite song of the summer.  It never fails to make me happy and, in turn, puts a smile on James' face!

Check out his awesome moves!

With love.